89 – Meet SRF’s Leadership Team: Info session for volunteers


Okay everybody Welcome to the webinar my name is Lauren Perry I’m operations manager at SynGAP Research Fund and today’s webinar is to introduce you to SRF and the team leads and how we’re organized. We have a really amazing group of volunteers and there we go so I’m going to give it to Mike to start.

0:30 All right yes thank you Lauren and thank you for pulling this meeting together and all the important work that you do. Just to remind everybody, the mission of this organization is to improve therapies and lives of kids and adults with SYNGAP1 and their families. That’s why we’re all here and when we started that it was all about we need to make better medicines and then it became data and you should all be signed up for Ciitizen and then it became biomarkers as an end points and now it’s really about just supporting this growing community and improving clinical care. And I cannot overstate how much this organization is growing and how prominent Syngap is in the eyes of Industry because of the work that we do and I think you know I was talking I’ll talk about this in my next podcast.

People don’t understand how important the work of patient advocacy is and they don’t understand that in the absence of a patient advocacy group for disease, things either don’t happen or they happen too slowly. What we’re here to talk about today is how this organization is growing and how there is room for everybody who wants to help so if you’re watching this right now it should be because you’re like okay I want to help and I need to figure out where that’s the question we’re going to answer today and I just want to underscore this work that SRF does brings therapies into reality faster number one.

1:58 Number two you know you get what you give times 10 so the work that you do with SRF allows you to work closely with other parents and and be part of this community that is the SynGAP Research Fund and that’s exceptionally powerful and healing and helpful for all of us. So I just want to thank you all for being here and if you haven’t seen it yet, Ed recently decided to write this blog about why people support SRF and there’s 50 profiles in there. So if you’re thinking about, “Do I really want to do this? Should I really be adding one more thing to my plate?”, read that Blog.

The answer is yes there’s a lot to do and I just want to preempt a question which is at the end of this. I was sharing this slide with one of the people who gives me advice today and they said wow Mike there’s a lot in here you got to tell people if this is over some of you are going to be looking at it and you’re gonna be like that’s where I go that’s the thing I want to do wonderful and some of you be like oh my gosh it was too much! Just tell me what to do.

2:59 So here’s here’s my answer. On the tell me what to do: fundraising, fundraising, fundraising! We need to raise more money from within this community and from our broader networks the science takes money. All the things we do take money and we as a group need to continue to improve fundraising and I think every family needs to feel like they have a chance to improve their child’s future by through SRF so that’s number one.

Number two the state Ambassadors and Advocates that you will hear about from Corey and Jackie are really important programs where in every state we need someone. So if you’re like, “I just don’t know where to start,” start there. Start with fundraising, start with the Advocates. Marketing and design and of course if you have science or clinical expertise you should be thinking MedSci. If you have Finance, legal, or contracts or IT experience, critical ops. we’ll get to.

3:51 But do not come to me afterwards and be like I just don’t know where to start with fundraising and then be a state Advocate or a state Ambassador. If you’re like I don’t know if I can sign up for a long-term job, projects are okay but we want you to be a part of this community. We want you to get to know other people and we all have work to do so looking forward to doing it.

This is high level and then we will double click on each of these boxes this is how SRF is structured broadly speaking. There is a board of directors who is responsible for everything. There’s a CEO which is me, and then there’s a C-Suite which is the CSO Chief Scientific Officer who you’ll hear from shortly that’s Katherine Helde; CFO who is Stephanie. The CSO leads MedSci. That’s group one. The CFO leads critical operations, that’s group four. The COO has not yet been hired, but that person will work with the leadership team. They will oversee contractors and they will oversee vendors.

4:49 The leadership team is composed of six groups Community activation which is Corey. This is all patient support. Resource mobilization – this is fundraising. Marketing and Coms is Ed. Partnerships Virginie, Advocacy Jackie, and Conference Stacey. That’s what we’re going to talk about today we’re going to double click on each of these groups and the ways in which you can help. But I wanted to start with this big picture so you can see how SRF is structured and all the different moving parts we have and with that I will hand it over to Peter.

5:22 Peter all right hey thank you guys so much my name is Peter Halliburton. I’m the Development Director with SynGAP Research Fund. I’ve been volunteering with SRF since just after my son Carter was diagnosed in 2019. At that time, SRF was a very small and lean organization. As soon as we got our diagnosis, I jumped in and put a fundraiser up on Facebook myself which I think prompted Mike to reach out to me. As we got to talking, he realized that my background was in sales and said you know you should help us with fundraising which really over time I’ve realized is not a skill set that I had coming in but it’s something that we’ve essentially just kind of iterated over time and tried a lot of different things. We’ve seen what has worked and so we’ve grown fundraising into a pretty successful machine within SRF.

Obviously as Mike alluded to there’s a lot more that we can be doing. The more money that we can be raising, the more that we can be doing to accelerate science for our kids. When we started this organization in the first couple of years we were doing one or two or maybe four grants in a year and those are typically $140,000 or so postto type grants. Over time that’s progressed to you know I think in 2022 we raised over $2 million and did about 15 grants so obviously the more that we can be fundraising the faster we’re able to contribute to the science and the faster we’re able to get to treatments for our kids.

To date I think we’ve raised 5.75 million so obviously not a small number and something that we should be proud of but again we can definitely build out the development team to be a bit more mature and support all of the different areas that we should be supporting, which are what you see under number four here with major gifts, family fundraising, events, grants, and sponsorships.

Today, the resource mobilization team is fairly lean. We’ve got a few volunteers that are helping and contributing in big ways. First and foremost, I’ll call out Suzanne Jones. She’s a force within the organization. She’s our board member and also the liaison to the development team. She does an event of her own, an annual Soiree and has raised over a half million dollars. Obviously Suzanne really cares about fundraising and has been extremely helpful from a leadership perspective. I’ve got Jessica Bell that is working for SynGAP Research Fund. She is a parent and volunteer. She’s been exceptional in a development operations role for us. As I’ve had less time to give, as my life has become more complex and my work life has taken up more time, I’ve had to pass off more and more responsibilities which has been really helpful to have Jess on board and she’s kind of taking over a lot of the day-to-day responsibilities. What you see on the screen here on the right hand side Tracking and Reporting most of that responsibility falls to Jessica today as well. We can really use assistance in most of the other kind of bubbles that you see on the bottom of the screen here.

8:56 I’ll just kind of walk through what each of these are and kind of what the responsibilities would be for the role maybe what we’re doing today and how we can improve them and I’ll keep it brief. Major gifts these are going to be your high net worth donors, high net worth individuals. We obviously need to continue to to work those relationships you know build those relationships keep those major donors aware of what SynGAP Research Fund is doing with past donations that they’ve made, thank them for their donations and keep them abreast of where we’re going moving forward and continue to ask for additional donations from those individuals.

Today we have two Syngap grandparents that are kind of running the major gifts process and that is essentially following up on all donations. I still think that there’s more that we can be doing around major gifts and we’re open to a lot of different ideas so if that’s something that speaks to you we can definitely use more help around major gifts. Family fundraising is going to be events like our Sprint4Syngap fundraiser that we do annually in the spring. It’s also going to be new families that are diagnosed and wanting to set up a fundraiser. Birthday fundraisers which parents are pushing out all of the time. I think areas that we can improve around the family fundraising would be potentially putting together a secondary event for the fall time frame. Our Sprint4Syngap fundraiser is one of the most successful fundraisers that we hold annually. It’s a peer-to-peer fundraiser this year and last year we raised over $250,000 through that event. I think putting a second similar type of event that can really get families on board do the heavy lifting for them so that they can just essentially create a peer-to-peer fundraising page and run with it would be just another way for us to increase revenue coming into SynGAP Research Fund. That’s an area to help.

10:55 We can also I think improve content around things like the birthday fundraisers and new families. The content that Facebook pushes out just kind of natively, it’s not emotional, It doesn’t speak to people so I think there’s a lot more that we can be doing around that family fundraising to improve that. It can also just be additional content which kind of falls to more of the PR side of the house. I know it’s not necessarily exactly under fundraising but more of the content that we can push out around the science and what SynGAP Research Fund is doing and providing updates to donors is going to continue to drive recurring donations and new donors as well.

We’ve got individual giving. So that kind of falls under some of what I was talking about with the family fundraising as well. We have events. So today we have several families that are running annual events for SynGAP Research Fund. Suzanne Jones as I was mentioning before has her Syngap Soiree that’s an annual event that has raised over $500,000. Julie and Michael Miles have an annual golf event that’s their Scramble for Syngap that also has been a really successful event and one that we should be duplicating across the country with other families that are interested in something like a golf event. We’ve got Nancy Kessler who has the Caren Leib Gala that she’s done I think the past three years now and it’s a very successful event for us as well. We host that in the Northeast in New York/New Jersey area and we’ll continue to do that event as well.

And then we’ve got families like the Stelmaszeks who Brett has run a fundraiser for the past several years, and it’s the The Cannonball Run has been his event for the past three years which I’ve also participated in. That’s a cross country live streaming type fundraiser that’s also raised over a half a million dollars across the numerous events that Brent has hosted supporting SynGAP Research Fund. Behind all of those events is a lot of planning that takes place. I think we need folks that are able to kind of look over budgets and help people with budgeting their sponsorships which I’m going to get to in a minute here as well. There’s just a lot of work that’s behind these events to make them successful and allow us to raise large amounts of money. We also want to make it simple and easy for new families that are interested in hosting events to do the same so creating templates around events, best practices, capturing all of that information, creating sample budgets that can be shared out with others and used as a template as well. Those are areas that we can use help from an event standpoint.

13:38 Grants we have a very lean team running grants today. We have a couple of folks that do have a professional grant writing background. For the most part what we’re doing with grants is just looking at grants that are coming inbound to SynGAP Research Fund. I think one area that we really haven’t tapped into that we could be tapping into is outbound grants. So if you have a background in grant writing or looking through various databases or portals for Grants and trying to identify grants that could potentially be applicable to SynGAP Research Fund, that’s another area that we could really use a lot of help. If you’ve got grant writing experience please reach out to us.

Sponsorships I mentioned before, that’s primarily going to be around the events but it’s also going to be for SRF’s annual science conference and we basically are able to raise, I think this last year we raised close to $40,000 through industry sponsorships that went to support overhead costs for our scientific conference. The conference last year, they’re not cheap. It’s not going to be cheap as the community continues to grow. I think this last year we had at least or over 225 attendees at our conference so you can obviously expect that there’s a cost associated with conference space, the audio and video that we’re using as well so any help around corporate sponsorships both on a local level for supporting the regional events and on an industry level supporting our scientific conference are both critical and needed. So if that speaks to you, again please reach out to us.

Tracking and Reporting again has been kind of handled by Jess to date. That’s going to be more so working within our Salesforce CRM and comparing donations year-over-year at certain times of the year or looking at certain events. If you have Salesforce experience, we can always use more help there’s always more that we can be doing so again reach out if that’s something that speaks to you. And I think that’s my portion and I should be passing it over to JR, Katherine Helde for the MedSci.

15:47 Hi thank you so much Peter hi guys I’m Katherine Helde and I am the CSO, the Chief Scientific Officer here at SynGAP Research Fund and I work very closely with uh two people Dr. Marta Dahiya is a radiation oncologist and so she is the head of our clinical side of things and then I work really closely with Lindsay Wieczorek, who is a PhD and she has a ton of clinical translational drug experience and or actually vaccine experience. The three of us work together and get lots of science stuff done. I think the first thing I want to do is just go over the org chart and then I’ll come back and talk about what some of the individual volunteer experiences are.

This is a big chart and it’s a big chart because SYNGAP1 is a disorder that we need to cure so there’s a lot of science that goes on. There’s a lot of clinical stuff that goes on so it’s a really big job to handle all the things that might come up for what families might need. It’s something that I love and I’m very passionate about and I’m going to tell you about the three main – I’m using my own Mouse but I know you can’t see my mouse so I won’t do that – so we’re going to talk about a knowledge management and then in the middle basic science and then over on the right the clinical.

Knowledge Management that might sound kind of dry but it’s actually really important and a lot of the volunteer opportunities I’ll tell you about will actually be in that side of things. So that’s basically taking the things that we have learned and making them sort of sticky so instead of it just being in my head it becomes a document it becomes something in a library it becomes communication like a Blog something like that. The middle here under basic science where Lindsay is the lead this has a lot of working parts so you’ll see the first one there – SAB relationship. The SAB stands for scientific Advisory Board. These are industry professionals who have agreed to be on our Advisory Board and you can find them on our website. We ask them questions and we ask them about grants that we receive when we’re trying to decide which grant proposals to fund. We ask them questions about some of the science we’re doing and we try to have really good relationships with them. I’m not going to go into a lot of detail on the rest of them but these are all sort of basic science things so like I said engaging with the SAB.

Number two there is the grantees. The people that we fund, we definitely need good engagement with them. We need to get updates from them. We need to ask them if they need any help with anything, how can we help their research go better. How would we do that? Well that’s number three – reagents. That’s like getting pre-clinical models for the disease so that’s what that’s about.

19:33 I’m not even going to talk about the rest of it. There’s lots of things within basic science. The next one is clinical so Dr. Marta Dahiya is the head of this side. Just like we have the SAB, we have the CAB – that’s the Clinical Advisory Board. These are medical doctors that we have advising us. Same thing – we give grants to clinicians and so we need clinical grant engagement with the people that are doing the work. Then there’s recruiting, just trying to find doctors that are going to be helpful. I think it’s time for me to move on. Pharma – there’s lots of things going on in here.

20:29 Impact and success -we’ve kind of gone past an inflection point where SRF was growing at a certain speed it’s now growing at sort of warp speed and it’s not just SRF it’s like the basic number of people who know about SYNGAP1-Related Disorders the basic number of people who know about SYNGAP1 is a gene that needs to be studied the basic number of people that know about SRF and what we do. Those have all just exploded and so as far as impact and success goes, every little thing that we do actually does have an impact trying to gather the stuff that we know right now and make it sticky so that we don’t lose it that really is going to lead to our success in the future. I have a list of just sort of General things here. There’s probably hundreds of small projects that people could do so please don’t think that this is the only stuff but if you have an interest in looking in at online databases I would love for someone to go to either the broad Gtex or to the Allen brain Atlas and just learn about it and then report back to me. Tell me what it says about Syngap. That would be an individual independent project that someone could do.

If you have good graphics, we have a lot of need for scientific education and so we have the ability to make our own graphics and that’s something that we could work on together. You can go to conferences. Our volunteers live all over the country right and even all over the world. There are conferences all over the place. You can go to a conference, attend it, and then report back and give us a little report on what you saw. That would be a fantastic thing to do.

I’m going to stop there – there’s so many ways to contribute, there’s so many ways to learn more about this disease. To be in this group it’s usually better to have a science background but if you don’t and you’re a librarian your graphics, something like that, please come to me and I could really use some help in those areas including if you’re good at gmail. Next up is Corey.

22.56 Hey there I’m Corey Baysden. I’m our Community Activation Director. My daughter Saylor is 6 years old and was diagnosed in 2021. We live in North Carolina on the coast and I’ve been volunteering with SRF since just about the day we were diagnosed. I kind of jumped in head first, ready to to help out. When I joined SRF there was about 800 patients worldwide and today we’ve got more than 1,400 with 400 in just the United States, so it’s grown quite a bit in the past couple years and we expect it to explode even more in the coming years. Our group’s focus is to support engage and grow the SYNGAP1 Community. We also help organize and recruit for research studies in the clinical trial so we work with the the MedSci team and try to give them all the the people that are willing to participate in the studies.

I’ve got a bunch of different people that are leading up the different initiatives. As of right now, I’m pretty much the one who reaches out to new families and engages with them initially. What we’ll plan on doing, we’re gathering up a whole list of state representatives for all 50 states and once we have the initial engagement with the new family, I’m going to lead them to their state representative so that state representative can really develop a relationship with them get to know what their needs are. Anything they can get help with they’re going to be there to help them out. Heather Bensch is my lead for community support. She’s not only going to help out with just about everything that has to do with community support, but she’s also going to be the state representative go-to person when they have questions. We also have Christi Burns who is the lead for Diversity, Equity, & Inclusion. She’s going to be really working this year to build out her team and make some real progress there. We have Jess Duggan, who’s our lead for our census. She’s the one that is making sure she’s tracking down all the new patients getting their information and logging them so we can have a a really accurate count of all of our Syngapians.

25:28 And then we’re looking for a lead for research recruitment and clinical trials recruitment. This person will be the person who’s in charge of keeping all the research studies organized, who’s in there, what they need, and making sure those positions are filled and the same thing for clinical trials.

One of the main reasons that I think the SRF and Syngap has really gotten a name in the science community is because of our families with all of them engaging when we reach out and we try to get them for different research studies everybody jumps on board and fills those studies faster than any of these scientists or researchers have ever seen, and it really stands out in the rare disease space. And because of that, we’ve got more people that are willing to work on our disease so the community support is a very crucial part of the whole organization and we really couldn’t do it without the awesome parents.

I concede to the next person who is … I don’t even know who’s coming up next … Mr Aaron Harding. He might be on mute.

27:02 I mean let me talk to this group broadly and then I’ll ask Kevin and Aaron and Stephanie to talk specifically. This group is called Critical Ops because this where’s critical work right? If we just go to the org chart quickly and then I’ll ask the various leaders to go. You can see we don’t have…. The CFO is de facto lead on this but there’s room for someone to just be a coordinator for all these moving Parts this is all of the work of doing this this organization and if you’ve been following our grants progression you know as Peter said in the first few years we gave five or six grants and then in the past two years we’ve given over a dozen grants each year. And those grants are complicated right. So that’s grants management, everything from as soon as the board says yes it’s funded the contract the reporting the payment, everything. Stephanie Finance can talk to her own slide. Kevin all things legal. People is both volunteer management and HR right so having someone who can help engage when people when they raise their hand and help the volunteers through the process of becoming volunteers that’s work and as we get more and more paid staff actually be that’ll also grow to an HR function. And then Roy is our go-to guy on all things IT. But this group is the nuts and bolts of doing the business of SRF and it’s a really important team so I’m eager to see volunteer and you know if Katherine’s group sounded like whoa this group is nuts and bolts any parent can who’s out there in the professional world can do this.

I don’t see Aaron on this call hope everything’s okay but I’m just going to talk to Grants management. That is like I just said from when a contract is approved working with the university to get the contract signed there’s always little things that need to be changed, making sure that everyone knows where to go when the contract is done, staying in touch with the institution on the logistics side. Katherine’s group stays in touch on the science side making sure that they’re invoicing us that we’re paying them that we’re getting our reports from them and that we know what’s going on. This is bread and butter project management and it is the heart of what we do. And with that Stephanie do you want to talk to finance and I think you even have your own slide, Stephanie. Lauren if you want to go two ahead.

29:35 For finance, it’s pretty much like Mike said, once all the grants have been approved, I make sure that they get paid and then I do. All of the the payments for reimbursing families for going to CHOP all the bills that SRF needs paid and then also working to get our audits done each year and our taxes done so we can get those out to the public and on our website. Right now we are currently looking at trying to have a volunteer that wants to do more of the day-to-day QuickBooks online accounting type transactions just making sure everything’s linking correctly, being reported correctly so when we report the financials to the board every quarter, we have everything up to date and know where we’re standing.

As far as overhead and how much we’ve spent on grants, how much we’ve already promised to make sure that we have enough cash flow to cover that. I think down the road if we have somebody that can help out with the day-to-day transactions on the QuickBooks online, we’d be able to do a little bit more on the finance and planning side, I’d be able to do a little bit more with the cash planning forecasting like I said making sure that we have the money for the grants that we’ve already promised making sure we are going to have the cash inflow to go ahead and sign on more grants. Just be a little bit more broad in that section and just do a little bit more planning and budgeting type stuff

Thank you Stephanie and then Kevin, legal.

31:31 I don’t have much to say I think what I would say is we have

31:41 a number of parents who are lawyers and you know I reach out to them and we have

31:47 conversations when things come up you know sometimes there are contracts that we’re looking at sometimes there are um

31:54 other issues that arise but mostly we’re just available when somebody needs uh some help from a

32:01 legal perspective and it’s on the as needed basis so if anybody else is interested in chipping in that would be

32:07 great you know um I think there’s opportunities to maybe expand what we do

32:14 from the legal perspective um you know I know Jackie is going to talk about advocacy but I think it’s been nice to

32:21 be able to help some families um advocate for their situations and that

32:26 can be something we could expand to do more of uh over time I would

32:33 hope yeah and it’s been it’s been great so everything from bread and butter legal for the org to getting involved in

32:40 specific cases and helping families it’s it’s it’s really impressive what what Kevin has done and then um HR is people

32:48 management again just engaging with people when they raise their hand and and getting that over the line and

32:54 helping people basically it’s helping people from when they raise their hand to to Landing them and one of the groups we’re talking about today and get making

32:59 sure that they’re happily engaged right nothing breaks my heart more than to see when someone raises their hand and we’re just all so busy that they they call

33:06 back in two months and be like what’s going on it’s like oh no so that’s work all by itself right just just connecting

33:12 um families with each other and making sure we have a good fit is is part of the work and then it if you are an IT

33:18 geek we use a lot of software to make this business work right we do website we do social we do I mean

33:26 Lauren should be saying this because she does all these things but we do a lot of tech and and it’s it’s not it’s going to

33:33 get bigger not smaller as the organization grows because we we can’t we need to be as smart as possible with

33:38 our use of technology so if you’re a geek there’s room for you in critical Ops please join us with that I don’t

33:45 think there’s much else to say Grandpa

33:50 Ed hello everyone I’m Ed gabler I am grandfather to four including Cole who

33:58 is seven years old now he lives about 10 minutes from me near Cleveland Ohio uh he was diagnosed in 2019 I think

34:06 there were somewhere in the 350 range worldwide at that time uh I’ve been

34:12 volunteering for little over two years and a little over a year in the communications and Marketing

34:19 Group um as the slide says craft and deliver the message uh what it doesn’t say is we

34:25 first have to identify what we we want to put out there and that mainly comes

34:31 from everybody else comes from leadership it comes from parents it

34:37 comes from new volunteers it comes from other people typically who say I want to tell my story I want to do this event uh

34:45 let’s get it out there on social media or in a blog or whatever it may be uh

34:51 then we have to craft it what does it look like is it going to be in writing what is it going to say how are we going

34:57 to say it and then deliver uh through email

35:02 newsletter social media um a multiple of uh places most importantly our

35:10 website um the website is like the key to SRF because that’s where most people

35:16 start that’s where they find us that’s where they learn about SYNGAP1 that’s where we tell our stories and we always

35:23 drive our social media campaigns to get back to our website so that they can see what we’re all

35:29 about um storting the brand is basically consistency professionalism and we want people to be

35:36 on the team who will be committed to that and make everything look nice doesn’t have to look the same but it has

35:42 to be consistent so that it’s recognizable um as far as success uh a

35:49 lot of successes we’ve had over the past year so the website’s the big one I mean

35:54 we were working on that for over a year it launched last December and it in my opinion is Far and Away

36:01 better than the old website it looks better it has more organization to it

36:07 and uh it’s more user friendly um we also have a few new things on the

36:12 website including a new uh revised Family Resources uh page for new

36:19 families to look at and for people to lead others to we launched two new podcasts last

36:25 year one in Spanish and sing one stories uh the other one’s Cafe that’s the

36:31 Spanish one um and then we’ve also expanded uh in conjunction with uh Vicki

36:38 artiaga the Spanish resources page for our Hispanic Community um let’s go to the

36:45 organizational chart please Lauren um as far as the organizational

36:52 chart uh I have three uh people who

36:58 help lead different areas and for those of you who aren’t good at math I have a

37:04 lot more than three little blue blobs there so we need a lot of people that can help out and it can be in small ways

37:12 it can be for a couple hours a week uh I can pick and choose what You’ like but I do want to recognize who is on the team

37:19 uh Dan heads up the website design uh he does a lot of the uh uh the technical

37:25 work behind the scenes to get that up and running um Olga uh handles most of

37:31 the webinars in with Lauren andiana uh handles the Wednesday

37:38 warriors uh I do have a small team of designers I do not have a lead design

37:45 which is top of my list and it was on Mike’s list at the beginning of my needs

37:50 uh but I do have a small group of some people that I am able to call on to see if they can uh pitch in uh Paulina Lis

37:58 sandal and uh Toby who I understand is on the call hi Toby uh we need to get

38:04 together I need to meet you in person somewhere or through Zoom soon uh but

38:09 there’s a lot more uh possibilities for a lot of other people to help out

38:19 um like I said the design lead is probably the biggest thing um in general once such as design is uh

38:29 created it falls to Lauren and me to uh take a look at it and make sure that it gets tweaked make sure that it is

38:36 consistent and it’d be really nice to have a design lead not only for that but also to be looking ahead at uh evolving

38:44 our designs and what else can we do and freshening some things up we do have a lot of templates in the design that is

38:52 part of the uh the brand uh that has been very very helpful and that was set up by our past design uh leader um Jen

39:01 Robert uh but that would be our top top uh Focus uh social media content and

39:08 posting is another big one that takes up a lot of time and could be done a little bit uh better a little bit differently I

39:14 am definitely not an expert in uh marketing and if anyone is an expert in

39:19 marketing that would be very helpful to have uh blog uh content and creating and

39:27 publishing uh that’s something that a lot of people a lot of volunteers a lot of parents do their own blogs they send

39:34 them to me or tell me they want to write a blog and I help them through that process uh don’t write a lot of blogs we

39:41 don’t need somebody to be writing blogs all day long I think that would uh defeat the purpose but we do want

39:47 somebody who can kind of coordinate all of the blogs and put it up

39:53 um the uh we had a public relations team last year

40:00 a Outside Agency that we uh paid we no longer have them so we are looking for

40:05 somebody with some public relations uh experience or press relations who can

40:11 lead up that uh angle uh I think that it would be very helpful

40:17 for um other families who want to get their story out in their Community to

40:23 have somebody to turn to that can help them out and uh establish them contact

40:28 with different uh different press um and then finally uh website

40:33 posting of content uh that takes uh some time uh I’m doing most of that right now

40:39 and would love to have somebody on board with that

40:44 um talked about the purpose of marketing communication but I have some goals too

40:51 we obviously want to spread awareness I mean syap one’s a rare disease probably

40:57 no body on this call or nobody involved with SRF now had heard of SYNGAP1 when they were were diagnosed um and we

41:06 need to get the message out so that we create some Buzz about it not only in

41:11 the professional Community but also to uh generate some some donations from people who’ never heard of it and so we

41:17 want to tell our story and spread awareness uh want to motivate families like the ones here on the call uh new

41:24 families coming in want to motivate them to uh to get involved and be passionate

41:32 about SRF and the message that we’re trying to put out there in the work that we’re trying to do

41:39 um want to promote events if you’re having a an event I want to hear about

41:44 it I can help you uh promote it I can you know put it in event P event page on

41:50 the website for you things like that I know that’s mostly up Peter’s alley but

41:56 uh as far as promoting it I can help out with that um and then obviously we want

42:02 to encourage other people to follow the lead of of new volunteers so we want to

42:08 Market that quite a bit um and again the biggest goal is telling the world what SYNGAP1 is

42:15 what SRF uh is what we do and uh I know

42:21 that there are a lot of people who do know SynGAP Research Fund um

42:27 and they’re impressed with how we’ve come along I know that for a fact because I’ve had people tell me that but

42:35 for the people who are not on the inside the inside is so much cooler it

42:41 is so it is just a phenomenal organization a daily I

42:47 see somebody coming up with an issue whether it’s a new family or a family who’s been diagnosed for years have a

42:54 question and all these people just SW form to say I want to

43:00 help get involved be a part of that because it is so rewarding so with that

43:09 I’m going to turn it over to group six probably yeah but before you do that

43:14 before you do that Ed I’m sorry Regin I’ve got to say like Ed is is just I

43:19 mean Corey’s like this too every everyone’s like this but like Ed is just an extreme example of a volun ER who

43:27 raised their hand walked in and was like Mike just just go just get out out of my

43:33 office Mike I’m in charge and he had just taken over and kicked indoors in a

43:39 way we don’t really give annual Awards just like one more we need a volunteer to be in charge of wars and be such a

43:45 pain but we should give Ed an award for just you know taking over and improving

43:51 way that is is sort of probably should have given it to Corey two years ago we should give it to Ed this year and then

43:57 just keep going but it it’s it’s exceptional I’m so grateful I don’t write newsletters anymore and I didn’t

44:02 have to oversee the website and and and the other thing to emphasize about Ed aside from how impactful he is is that

44:08 he’s not a direct caregiver right so and we’re recording this so if you’ve got a

44:14 a sibling who’s under who’s underutilized or if you’ve got a parent who’s bored in retirement or whatever

44:20 send them this presentation this is going to be on YouTube like hey why

44:25 don’t you volunteer with SRF because well I think extended F people who aren’t directly caring for a

44:39 scapanus impact and yet having said that some people in spite of having a crazy

44:44 scap being at home still also manage to deliver value day in and day out and and that’s a great setup for Virginia so

44:52 here’s Virginia hi everyone uh I’m Virginia McNamar my son Ty is almost nine

45:00 can’t believe it he was diagnosed um almost more than seven years ago now and

45:07 I’ve been involved in the S up Community about the same amount of time and with SRF from the beginning uh the

45:14 past three years ago I’ve also been working in a rare disease space in partnership with uh advocacy group and

45:22 so Mike was like well you’re now in charge of effective partnership so here I am talking to you guys about why you

45:29 should join uh my team because the other one have not been saying join my team and I’m like join my team this is why

45:36 I’m here this is a cool team join my team uh so why uh can you join can you

45:43 change can you switch the slide please Lauren um this is our orc chart I’ll go

45:50 over that really quickly and we we’ll move to the to the next slide where we’ll dive a little bit more about all

45:55 the different types of Partners ships we have at at SRF so until now we kind of went over all of the

46:02 internal things that we can do at SRF this team is more what are we what can

46:09 we do with the external world uh and mainly the ra the rare rare disease world uh and there’s a lot going on and

46:17 this team is really trying to keep a pulse on what’s going on out there so we can keep those partnership going and we

46:24 can figure out how we can build those good partnership and um just keep going

46:32 keep figuring out what’s going on um I’m just tired I’m so sorry I’m not my words are terrible today I

46:40 apologize all right can you move on to the next slide please there you go all right here are

46:48 the different types of partners that we have uh at SRF we have the Pharma

46:53 Partners non-pharma industry the sing Global Partners which are other

47:00 organizations the PAGs and the rare embolic groups so the format Partners

47:06 what we need um what I need to help with in that in that team is to I need people

47:12 to help me and help us um keep track of our all the in all

47:20 the industry partner all the Pharma companies that have Syngap in their pipelines plus other companies that are

47:27 doing some great work great work in the in the rare disease space and just let us know what’s going on there’s a lot of

47:35 company a lot of science happening and it’s really hard to keep

47:41 track um it’s just so many so much news going on we all trying to keep track

47:47 Mike is always LinkedIn is a great space to to be on and just follow follow those

47:52 companies and if you see news that it’s interesting just relay that to us us uh

47:58 and that’s really it so it’s not it’s not it shouldn’t take long you can select a couple companies that you want

48:04 to follow um and then if there’s something interesting and interesting news that you feel is relevant to us

48:10 just let us know and then we’ll we’ll follow up with that non-pharma industry those are all

48:18 of the partners that are usually if you see you should recognize those logos if

48:23 you don’t then that should be like we haven’t done job and those a lot of those are tied to studies and and are

48:31 tied to some of the projects with Corey’s team so a lot of our Partnerships are working closely with

48:39 the commun community activation team so it’s we already have projects going on

48:44 with them there’s citizen rarex Simons so those we’re actively recruiting for

48:51 studies but we still need to have we need to attend meetings we need to again

48:56 see what’s going on they’re all pushing out social media it’s still hard to keep

49:02 track of what’s going on in that space g DX andv those are genetic testing

49:08 company we’re still trying to build partnership with them and it’s just like making sure that they are communicating

49:15 with newly diagnosed families Beacon apparo those are all good U partnership

49:20 that we have going on it’s a lot um and it’s again just we need one or two

49:26 people people to just pick and choose which one you want to own uh and it’s

49:31 not going to take a lot of time but it’s just keeping track of um what’s happening with each of those Partners

49:38 Syngap Global um we have a lot there’s more and more um organizations in the

49:44 world and we are partnering with all of them um Syngap Global Network is the

49:50 umbrella um organization it’s not a real organization but it’s a Coalition of organizations there’s quarterly meetings um you can attend if

50:02 you want to participate in in in those meetings and um again it’s just keeping

50:08 track on social media what are our International Partners doing um if there’s something interesting if they

50:14 have an interesting event just let us know and uh we can amplify flag it to Ed

50:20 he can share uh that’s another thing that we like to we like to amplify our

50:25 our um our part our other C Partners other Pags so those are the

50:32 other rare disease um and Pags stands for patient advocacy groups um those are

50:38 the other rare disease groups and why is it important to partner with them they

50:44 um or keep track of what they’re doing they could be having they could be doing

50:50 some different type of research they could have some great ideas in fundraising and merchandise

50:57 and anything so it would just it’s just be it’s interesting to follow a few groups and figure out what they’re doing

51:03 so again you could just follow them on social media and then report to us if there’s something that you like um you

51:11 like what you seeing we are there are several groups that we are on a regular

51:16 basis partnering with we have several projects in common grants in common uh

51:22 so we are often talking with many of those groups um

51:27 on a regular basis but uh we don’t always follow everything that they do

51:33 and so having more eyes and ears in the space on social would be very helpful

51:39 and then the rare umbrella groups these are organizations that um their mission

51:46 is just kind of help rare disease organizations in general they all have kind of their different Niche you have

51:51 combined brain rare epilepsy Network agenda Global genes uh and others so all

51:58 of the logo that you have there those are just a sample of the organiz of the partners that we have there’s more um so

52:04 just to give you an idea of the amount of partners that we have to keep track of and um the so those umbrella groups

52:15 usually we have to attend meetings um they could be monthly

52:21 quarterly um and there’s usually good good educational meetings so you will come to attend if you want to

52:27 um and one of us on the leadership team will usually attend as well um but it’s

52:34 great um great education and uh same thing it’s just making sure that helping

52:41 us coordinate to make sure at least someone from SRF is represented at those meetings and

52:47 participating um so a lot to do on the partnership on the partnership team um

52:53 it’s fun work and um and it’s it shouldn’t take a lot of time

52:59 if you grab a couple Partners to follow and you could do that um in conjunction

53:05 with other roles at SRF can I can I can I just editorialize for one minute sure

53:10 I agree with everything I mean virin said a lot you can just follow this group and report back as and I would

53:16 just add comma as a starting point right as you as you as you know as you start

53:22 to figure these groups out what I think a lot of people people don’t understand is how much time and

53:28 energy we spend building valuable relationships with these groups virgin for instance has

53:35 just to her credit spent way more time than any of us want to admit on a on a

53:40 five-way grant with four other groups um that we’ll be excited to announce at some point in the

53:46 future that requires a certain level of trust between us in these groups to

53:52 agree to do this this kind of work together and and that’s real and I think you know going to those meetings combined brain agenda Ren Global genes

53:59 you learn so very much and then you know it’s just the the basic premise has to be in

54:08 addition to having an ultra rare disease there is not enough stuff in place to help our kids and and our job is to put

54:16 in place what needs to happen for there to be therapies for our kids and there’s no Playbook there’s no secret list

54:22 there’s no no one knows how to do this the way you figure this out is you look at other people are figuring it out and

54:27 you work with them and you look at people who are a half step ahead of you and you work with them and so the the I

54:34 want to agree wholeheartedly with Virginia you can do as as as you can start with just tracking the companies

54:40 or the Pags or whomever and being like hey this came to my attention why aren’t we doing this or we could do this better

54:45 but the next step is to get to know them to go to meetings with them and to really become a part of the SRF’s connectivity what we a lot of what we have done right we have done because we learned from our friends but to learn

54:58 from our friends you got to make friends right and so and we need you as volunteers to help us because as SRF

55:05 grows and the space grows the number of connections are are infinite and and what I spend more time saying no to

55:11 things right now than saying yes to things because there I can only work so many hours a day and so we need that’s

55:16 the whole reason we’re we’re consciously expanding the scale here is we need to

55:21 to hold hands with as many people and companies and Etc as possible I’m sorry Virginia

55:26 back to you no I’m done that was exactly what you said

55:35 okay okay hi guys I’m jockie canier and I am the patient advocacy director I

55:43 have Jaden she is 20 GNA be 21 in a couple weeks and she was diagnosed right

55:49 around the time uh with with Peter I think we’re like a week apart for

55:55 diagnosis in July 2019 um and we can I guess review the

56:03 organizational chart and we’ll come back to

56:09 this okay and so this is very loose right now because we definitely um need

56:16 advocates in in this space we are looking it’s very broad there are a lot

56:23 of different um areas that you can get involved in with advocacy you don’t need

56:28 to have all of these as something you’re good at you can pick one particular

56:34 thing but um specifically what we are really looking for

56:40 is parallel to Corey’s program where we’re going to have the ambassadors that

56:46 are you know assisting with families and in the community activation this is a separate program which is going to be

56:54 the state Advocates and we want to have one in every single state and hopefully start to develop teams within each state

57:02 as well and once you’re on this team with the advocacy team um there’s a

57:09 broad range of areas that you can get involved in what whatever you want to learn you don’t need to have experience

57:15 in these things this is the group if you want to become an empowered parent um

57:21 this is the group for you and so we we are going to we already do we we work on

57:27 Congressional Outreach Federal issues working with uh re Regulatory Agencies

57:33 um there’s going to be state issues local state uh uh bills that might

57:39 impact you uh we insurance is a huge thing in fact uh Mike Mike and Katherine

57:46 and I just met I think yesterday talking about kind of looking forward um you

57:51 know whether you have HCBS which is home Community Based Services uh Medicaid

57:57 whether you have private payers Katie Becket those kinds of things how do you get that that’s very different in each

58:03 state but even if you have private private payers are they going to cover the treatments that we’re trying to get

58:09 involved and or trying to get developed and having those conversations early to

58:15 make sure that all those things are in alignment education it that was where

58:20 one of the ways that I started in the very beginning because your Niche might

58:25 Evol involve as your child ages right and so if you have a young child that needs an IEP and you’re going through

58:32 that kind of challenging process as you’re learning all these rights and and different things like that education

58:39 might be where you uh hi

58:46 hi let’s give tony a moment you can take them off mute Mike

58:51 give you want no I’m sorry it just he’s just he just blew in he does that sometimes

58:58 Jaden loves it I say give him the moment you know but you know if you have

59:05 educational things going on um that might be your thing and then housing housing is going to become a much bigger

59:11 issue of course once they become adults can we go back to the last slide real

59:17 quick and so okay impact and success right um we already have had quite quite

59:24 a bit of impact um in the advocacy realm but we are

59:29 looking to grow more Advocates and this is a group where I’m not going to be

59:35 teaching you what to think but this is how to think and how to find the information that you need um we’re

59:41 really looking for those kind of creative people critical thinkers you do not have to match my personality or or

59:48 anything like that Ed’s going to be putting up a link to a webinar I did several months ago um for another

59:55 organization but it’s all about advocacy and how it doesn’t matter if you have an

1:00:00 introverted personality or extroverted if you you know you’re good at you you

1:00:05 like a certain social media platform whatever it might be there’s a place for

1:00:10 you in advocacy we need people researching we need people looking through their state links and and

1:00:17 helping us develop resource guides um we need people who are going to help assist

1:00:23 families in their IEPs and and we’ve done that with several families um we’ve

1:00:30 we have 100% success rate so far uh we we’ve made some really big gains on

1:00:36 education uh Nancy Marta Uh Kevin you know they we we’ve all been involved

1:00:43 with those and that’s been huge that’s very impactful for people uh that have

1:00:48 younger children and then now we’re getting into more issues as our children age up we’re having more issues with

1:00:55 hcvs home Community Based Services and that is different for every state so we

1:01:01 really need people to volunteer for their state so I can help you learn how to find that information and we can

1:01:07 start developing a guide for families um we’re also are going to be

1:01:13 like I said working on some federal issues and you’ll have an opportunity to learn how to engage with your

1:01:20 legislators whether at a state or federal level you can see the picture there is me testifying at my

1:01:26 state capital um but the important thing like I said to know about this group is

1:01:32 that we’re the Defenders right we we are the ones that when people come up against you know discrimination issues

1:01:39 when you’re hitting barriers with getting your insurance when we’re the ones that if we don’t know the

1:01:44 information we’re going to find it somehow we help Elevate SRF

1:01:49 influence by the different councils we sit on and the positioning we have with

1:01:55 in our state helps us form alliances and Partnerships strategic Partnerships with

1:02:02 others so we cross over the other groups right if if you’re in a state Council

1:02:09 and like for example Terry Joe bash who you know runs combined range she’s on

1:02:15 the state council with me and so you know um she’s very close friend with

1:02:21 SynGAP Research Fund and Mike and I didn’t start that that relationship but

1:02:27 that’s what I’m saying is you’re going to meet influential people in these different roles that you play and you’re

1:02:32 going to be learning so much that even after hopefully you volunteer for SRF

1:02:38 for the rest of your life but no matter what um years down the road say we have

1:02:44 a cure and and we’re all we’ve all worked ourselves out of a job this is still going to be useful skills you’re

1:02:50 going to be able to learn how to defend your child’s rights how to to find the

1:02:56 information that you need to knock down the barriers that exist for them throughout their lifespan so we really

1:03:02 hope you consider joining our advocacy group

1:03:10 tip all right just briefly Stacy

1:03:16 um the the all of the people you’re seeing today are exceptional and what’s

1:03:22 nice about Jackie is you have a chance to really learn from a

1:03:28 pro the the the the advocacy is something I have not done for five years

1:03:33 we’ve just had so much to do the fact that Jackie has has stood forward and said I’m happy to lead this is is is

1:03:39 really exciting so if you’re if you’re if you’re curious about any of this like please don’t be intimidated we are a

1:03:44 supportive group and we have great people so you know give it some give it

1:03:50 some thought because that’s that’s a huge opportunity and even if we work even if we work ourselves out of a job on the science side

1:03:57 our children will always need advocacy so thank you for being here Jackie for your leadership and then Stacy who I was

1:04:04 I think my first meeting today was with Stacy and now I’m seeing you again how fun is this over to you good start of

1:04:10 the day and of the day um all right my connection is kind of been off and on so I apologize um if for some reason you

1:04:16 lose me Lauren is uh knows it all as well so she can jump in but um I I’m

1:04:23 Stacy I live in North Idaho my son Jack was recently diagnosed in November he’s

1:04:28 four um so I was anxious to jump in find a way uh to be involved and to help my

1:04:35 background is in sales and marketing I work for a cpg company now and I’m

1:04:40 excited to take on the lead for the the conference this year so for those who

1:04:46 may not know we’ve got an annual conference going on it is in December December 5th and 6th this year in Los

1:04:52 Angeles it’s a rotating um rotate City based on the American epilepsy society

1:04:58 meeting every year so we follow that um this year it is in Los Angeles we um had

1:05:04 some great meetings today and feel confident about our venue we are just working out the the details there um but

1:05:12 there’s a lot that goes into planning and putting together the conference and

1:05:17 definitely looking for some additional volunteers to help make that happen we

1:05:23 have been working uh with a fantastic G named Laura who’s part of um SLC 61 rare

1:05:30 disease and she has a lot of experience putting events together and we’re also

1:05:35 working with cure Gaba a um and we’re working on leveraging our resources

1:05:41 we’re each going to have our own separate conferences um however we’re doing a really great job at leveraging

1:05:48 the costs down finding a facility that can have all of our groups and and just

1:05:53 work together to create a really great event so U they’ve been instrumental especially Laura with SLC connect and um

1:06:02 I’ve just been really enjoying working with her and and putting this thing together um our goal really so please

1:06:08 attend the meeting tell your friends and family uh we really need to continue sharing the message on getting getting

1:06:15 the attendance out there it’s on the west coast this year we really are needing I think some graphic design

1:06:21 assistance to help us create our registration page our marketing materials everything that’s going to

1:06:28 help it make it come together uh that’s going to be really key in in helping us spread the message you can pre-register

1:06:34 now by the way if you go to the Fantastic new website and go under events and you can see the 2024

1:06:39 conference you can uh pre-register I was going to include the link but it looks like not everybody would receive it just

1:06:45 the hosts and panelists uh but let’s see anyway Thursday is so it’s December 5th

1:06:52 and 6 Thursday is the science day so um Katherine is taking the lead on that and

1:06:58 we’ll be putting together a fantastic agenda working with different scientists and researchers to to help uh spread the

1:07:04 word on the latest and greatest I think a really great opportunity to learn you know what’s happening out there

1:07:09 within SYNGAP1 and uh the the exciting findings and studies and and whatnot

1:07:15 everything you need to know there uh Friday is the family day really more connecting with the the community the

1:07:22 families hearing and learning from each other just a really great way to connect

1:07:28 and um and and and learn from one another you can bring your families bring your children um you know we are

1:07:35 making it a familyfriendly event I’ll be actually out at the venue next week um in person to take an inperson scroll and

1:07:43 and really kind of understand the lay of the land um so we can make it as smooth and seamless as possible um so as far as

1:07:50 the volunteer opportunities we’re going to need a lot of hands- on Deck like I said to make it happen especially um at

1:07:56 the conference itself I would say um in the I already mentioned the graphic design lead with the marketing materials

1:08:03 we are putting together some events Thursday night there’ll be a reception um with the combined other rare uh

1:08:09 diseases the SLC 6 A1 um and the Cure Gaba a um along with um Mikey will have

1:08:17 to jump in and add the add the other companies that were Citizen and combin

1:08:23 brain and SLC 681 and SRF have done this for the past two years so we are establishing a strong tradition here for

1:08:29 Thursday night and it’s going to be amazing perfect thank you yes and then Friday night is more of um a family

1:08:36 event night for for the families so working or looking for an event coordinator that might um might help us

1:08:43 put that together that would be a really great opportunity for a volunteer to jump into um swag As Always uh something

1:08:50 that we you know like to try and include in conference so someone who may be interested or passionate about that

1:08:55 would love a volunteer opportunity there um at AV assist this is something that I’ve been definitely not my forte but uh

1:09:03 working with the different hotels on on understanding you know what those needs are there so anyone who may have

1:09:11 experience in that especially transferring the material once we get it we’re going to be recording um and

1:09:16 putting it up on the website would be really helpful on-site like I mentioned greeters for the registration on-site um

1:09:23 setup and takedown so so lots of areas where you can jump in and help um overall though we we really need

1:09:29 attendance so um please come and and share the word and I’m excited to be

1:09:34 here and excited to help put this together and uh with Lauren and um the rest of the team so um reach out the or

1:09:41 chart is pretty basic if you go to the next slide it’s kind of ever evolving pretty much what I just kind of

1:09:47 discussed on some of those key volunteer opportunities Katherine’s leading the science day Ed has been extremely

1:09:54 instrumental in helping the Family Day agenda um but really getting some help with those Thursday Friday events and

1:10:00 the swag um as I said ever evolving but those are where we’re at right now thank

1:10:06 you Stacy and again Stacy probably gets next year’s award for jumping in from and just taking over which has been

1:10:11 lovely I I I I want one one word of caution on the conference Stacy made it

1:10:17 sound like we need a lot of day off volunteers we need volunteers starting now to help with all to help with the

1:10:23 planning and the logistics and once the conference is over you get about three weeks off before I send an email and say

1:10:29 okay what do we learn how do we do better next year and when can we start planning 2025 because that’s exactly

1:10:35 what I’m going to do like th this conference is rapidly becoming the heartbeat of this community it is it is

1:10:41 of for many the first time they connect with other families and the amount of information and the amount of connection

1:10:47 and the amount of just I can’t I I don’t have words to

1:10:52 describe how important the conference is and if everyone should go and if you if

1:10:58 if this is interesting to you please sign up but understand this is bigger than a two-day event this is a this is

1:11:03 our this is our prom right this is our annual moment where we we we sit with industry and Academia and each other and

1:11:10 we connect and we take pul and we take inventory of where we are so it’s a I cannot emphasize enough how important

1:11:15 this is um virginny y all right so you’ve heard

1:11:21 from all the team leads and I hope you heard I heard something in there pick

1:11:28 your interest and um you found something that you want to do at

1:11:34 SRF and if not and you want to learn a little bit more or you um you still

1:11:39 want have questions about any of the teams you feel free to reach out to me or any of the team leaders we all GE to

1:11:46 answer any of your questions um but if you’re ready to jump in and volunteer the next step is to

1:11:53 register with us and to go to betterfly.com. There’s the link here

1:11:59 Lauren can put it in the chat you can also access it directly from the website it’s probably easier than figuring out a

1:12:07 long link uh if you go to the website you go to which tab is it Ed um find it

1:12:14 quickly s families under families and then connections volunteers with SRF and

1:12:21 right there there’s a button that will take you straight to where you need to register and in there you will see all

1:12:27 the different ties with all the different teams uh and then you can select the roles that you’re interested

1:12:33 in the teams you’re interested in you can select multiple ones or just general interest if you’re not sure what you

1:12:39 want to do from there we’ll reach out and we’ll set up one-on-one time with

1:12:44 you and um figure out what you want to do and then from there you’ll sign an

1:12:49 NDA C of conduct we’ll sign an email address slack and then you’ll be ready

1:12:55 to go and jump in deep end and join our team and the

1:13:01 madness it’s not Madness it’s it’s excitement it’s a fun it’s exciting it’s

1:13:07 it’s good it’s good it’s it’s good fun good it’s a good fun yes it’s a it’s a good team you see all the pictures it’s

1:13:14 we always on slack talking to each other it’s it’s fun it’s productive and we

1:13:20 feel like we’re getting things done and I think that’s the best feeling in the world

1:13:26 any questions thank you vir jinny

1:13:32 yep any questions you can raise your hand you can put them in the Q&A you can ask to speak

1:13:43 live so his next steps you can go to that volunteer form and you can click on it and say I want to volunteer you can

1:13:49 email anyone here uh Rainey rais your hand let me let me

1:13:55 let Rainey talk I’m just going to pull you in as a panelist Rainey so you can do that orow

1:14:01 you to talk okay where are you Rainey there you

1:14:07 go if you if you unmute Rainey you can talk hey hi everybody um I’m Rainey just

1:14:16 a quick question so like I have very little education skills I am not a good

1:14:21 speller I’m not a good reader anything like that but if I’m taught a specific skill like data entry or how to do

1:14:29 something I learn very quickly and I excel at that is there any like way that

1:14:37 if there is a specific job that you guys need help with that I could be trained

1:14:42 because I can I can absolutely we have a good idea for where to put you rainy

1:14:48 already because you sorry I jumped it Cory can Corey can let Cory he’s bad

1:14:55 he yours I know go ahead your your ears must be burning or

1:15:01 whatever that is because we were we were all talking about you today so okay I didn’t have time to give you a call

1:15:08 beforehand but I will be in touch okay sounds good great idea for you love that

1:15:14 rainy I’m I’m glad you asked the question because in case other people are feeling like they need more

1:15:21 professional training to do something I want them to understand that we are the the the the the the non-negotiable

1:15:28 requirement for being a part of SRF is being a good person with a good heart and if you’ve got that we will we will

1:15:34 work out we’ll find the right place for you and I think you know I I don’t care how what credentials you have I know

1:15:39 some very stupid people with a lot of letters and I know some very capable and smart people with no letters and um I

1:15:46 want to remind everybody that you were the mom who got diagnosed and said well I got a little time on my hands instead

1:15:52 of you guys paying for my plane tickets to chop why don’t I just drive across the country and do all three trials and

1:15:57 I mean that is the kind of let’s get it done attitude that that is why SRF is

1:16:04 successful right that is that is I don’t think anyone’s done anything quite that crazy but you know everyone on the

1:16:09 screen is a certain level of crazy where they’re like well let’s just do it right Stacy Miller’s like I was just diagnosed

1:16:15 I’ve never been to the conference I should be in charge of the conference that’s amazing and that is you know

1:16:20 that’s that’s what we need uh you know we need we need ads and cories to be like Mike just get out of my way I can

1:16:26 do this better than you and so that’s what I was going to say we’re we’re all learning this at the same time so

1:16:32 there’s none of us or at least most of us have not ever done this before it’s it’s it’s a learning curve so don’t feel

1:16:39 intimidated because we’re all in it together so yeah I I for the record I disagree wholeheartedly that you’re not

1:16:45 qualified but I I’m glad you asked the question because I want people to know that we’re happy to teach anyone who’s

1:16:50 who’s got the heart and the willingness to work so there’s a great step in real

1:16:56 quick and just say you know part of part of what it is about my particular group

1:17:02 is that I am going to show you where to

1:17:07 go within your state to be able to get training in specific areas that you’re

1:17:14 interested in you know um right now you’re you’re working on your child’s

1:17:19 IEP but there are State specific training programs that will teach you

1:17:25 everything about idea and they’re free and you know how to be a mentor and become certified as an educational

1:17:32 Mentor it’s completely free through various different programs and there’s other things for neurodevelopmental

1:17:38 disorders or for leadership and advocacy and Disability Rights and that training

1:17:45 is part of what it is to be in the advocacy group because this isn’t about

1:17:50 having a PhD or or anything like that in this group this is about how do you find

1:17:56 the information you need what is holding you or your child back and how do you become an expert on that particular

1:18:02 topic that’s what this group is all about yeah other

1:18:10 questions I see no hands and we’ve been going for over an hour it’s a little late but I love that this is recorded

1:18:17 because we will cut off the front bit where Virginia told us to start over and and we will Lauren messed up no no no no

1:18:24 one messed up we just that’s fine and and you know please reach out to us

1:18:30 generally our email is first name at curesyngap1.org you are welcome here this

1:18:35 you know when Ashley and I were diagnosed I think I’ve said this a few times there was a whole lot of nothing going on I said I wrote this I wrote

1:18:42 this in the the blog that I just shared read the blog you know there there was nowhere for me to go and help my kid so

1:18:48 I built it right but this SRF is is and I hope you getting this message because

1:18:53 with the blog with the 50 and what hour you just spent this organization exists for families of scapens to come in and

1:19:01 have an impact on day one a ask anyone call anyone we move

1:19:08 fast Stacy brought me an idea this morning I talked to five other people it

1:19:14 was it was approved hours later like things get done around here and if you’re excited about making the future

1:19:20 better for your kids this is where you do it no no one else is doing it at this

1:19:25 scale this speed and no one else is is this plugged into Syngap-land so come join us you welcome and it’s actually

1:19:33 fun yeah it sucks that our kids are sick our lives are hard in ways that nobody understands but we’re still allowed to

1:19:39 have a community and to enjoy ourselves no one here is crying no one here is miserable yes none of us are going to

1:19:46 sleep tonight but who cares we’re having fun because we know we’re doing good work right so come and join the party

1:19:52 with that thank you all I’m gonna somebody end this Lauren is even in

1:19:58 charge I think you are okay bye