61 – Susan’s Fundraising Story: How a SYNGAP1 Auntie Raised $100k at Sprint4Syngap

Here are our introductory comments: 

Today’s webinar is a bit of a departure from our usual scientific series. Instead, we will hear from the top fundraiser of both Sprint4Syngap 2021 and 2022.  In 2022 alone, she raised over $100,000 for SRF. Susan Tavilla had a successful career in hotel management and then made a surprising change. She came onboard at her brother’s wholesale produce company, with the agreement that she would run the office. But she quickly discovered  that she had a knack for sales and, learning the business in the ground up, has since become the company‘s most successful salesperson.
She is a shrewd businesswoman in the very best sense of the word. She knows how to make a good deal, one that leaves every party satisfied. She has brought innovative techniques to the world of wholesale produce sales, and she brings some of those same ideas to fundraising for SRF. She is aunt to Syngapian Myla, sister to Syngap dad Ernie Tavilla, sister to SRF’s Operations Director Sandy Smith and sister to SRF board member Stella Tavilla.


Download the very effective and well-written letter Susan mentions in her webinar.

This is the flyer Team Tavilla used for their event. 


0:07today’s uh webinar is a bit of a departure from our usual scientific series instead we’ll be hearing from the

0:14top fundraiser of both first sprint for sin gap 2021 and 2022.

0:20in 2022 alone she raised over a hundred thousand dollars for srf susan tavilla

0:26had a successful career in hotel management and then made a surprising change she came on board at her brother’s

0:33wholesale produce company with the agreement that she would run the office but she quickly discovered she had a

0:38knack for sales learning the business from the ground up she has become the company’s most

0:43successful salesperson she is a shrewd businesswoman in the very best sense of the word and she

0:50knows how to make a good deal one that leaves everybody satisfied she has brought innovative technique uh

0:56techniques to the world of wholesale produce and she brings some of those

1:01same techniques to fundraising for srf she’s the sister to send gap dad ernie

1:07tavilla and aunt to singapian myla welcome susan

1:13thank you to get started um can you tell us a little about you and your story and how

1:18you got uh started with fundraising for srf okay um

1:24what you said is kind of true it makes me sound really good though when my mom was diagnosed with a brain

1:32tumor which was maybe 10 11 years ago

1:38um there were only about 900 people with a brain tumor in the in the united

1:45states at the time and she had a glioblastoma which at the time was very rare

1:50boston was hosting its first uh brain tumor walk i happened to just see it

1:56online and i said hey let’s do this you know it’ll be something we can do for my mom because they told us that she only

2:03had a couple months to live i thought it’d be something for her to be excited about and

2:09i got to start to do some fundraising on a small scale i had never done it before

2:16and it ended up we were the top team and we were actually in competition with another team whose daughter had a brain

2:23tumor she’s doing well my mom did pass but she lived three and a half years

2:28and we were the top team and over the five years that i did the brain

2:34tumor walk and had team to villa i raised 330 000

2:39for them over five years um my mom had passed we did the braintuber walk one more year

2:46and then i felt as if someone could kind of take over my place because there was a lot of people whose

2:53parents siblings husband whatever were living with their brain tumor some of them aren’t fatal and i thought you know what

3:00they can do without me and at that time i had a year or two off

3:05and then here comes uh myla we didn’t know what was wrong with her but it ended up

3:13giving me another opportunity thanks for the background on that can

3:18you um tell us a little bit about the 2022 um sprint for singap event and then

3:25also i know you guys you know last year i think was your first year participating in 2021 our first our first event um

3:32you really you really you know increased year over year what you’re able to fundraise there can you tell us just a

3:38little bit about how you got started last year how you built on that for the 2022 event and kind of what all

3:46okay in 2021 sandy had kind of started running it

3:51and i wasn’t involved until i’m gonna say last minute but it was maybe

3:57the last six weeks and we weren’t raising in my mind enough

4:03money so that’s why i had to step in because she was sandy is that my sister is very much a

4:10technical person and does a lot of the tech stuff and the back stuff i’m more of the touchy feely i know this

4:17person i know that person i make lots of deals that’s what i do i zig and zag so

4:22i took over the fundraising part i did a few letters i made phone calls i made

4:27emails i did a few things and we did start to raise money um

4:33just it was almost a little disorganized though i should say because it was kind of last minute not that you guys were

4:40last minute but we were because we just weren’t prepared we weren’t as prepared as we were this year so i don’t

4:47even remember what we raised but i mean we did respectable from you know

4:53i think it was about fifty thousand last time okay fifty thousand dollars so a respectable amount of money but we

4:58weren’t quite as organized we didn’t start as early and well also we were in

5:03that pandemic even worse i mean they’re still supposed to wear a mask to the thing and you know all that kind of

5:10thing that honestly you know it was tough we were blessed with a good day it was actually a really

5:17nice day and we had a huge turnout we never expected it and sandy had a lot of information i had one

5:24of my customers wilson farm they do um there’s a huge farm near us a farm stand

5:30he brought drinks and i had them bake cookies with milo’s name said team myla

5:36and you know for singap and we did have a really good showing for the walk it was surprising we raised some money that

5:42day but that’s the first year you know we did it but we i guess my

5:48whole self wasn’t in it i wasn’t really in it and so when

5:53we heard you know i was going to do it again it’s going to be the second one um i talked to cnd we actually met i got

6:00a friend of mine involved who’s done some party planning for me because i wanted to do a real event i wanted to

6:07have a walk i wanted to have it organized i wanted to have a place you know i wanted to have

6:14a place for us to go without because of the first place there was a million other people there you know it wasn’t

6:20our walk it wasn’t our place so we started looking for places that we could

6:25rent or um use and we decided on lexington where we grew up and also we

6:31met with hadley’s mother emily she came to one of our meetings so she wanted to know you

6:38know what we’re doing and we decided to invite all of the syngap massachusetts families

6:43together because we thought that would be great you know this six families and let’s have them so i said you know what

6:50sandy let’s have them all over to my house a couple weeks before the walk for lunch and a party so that i can get to

6:57know them because sandy knows everybody because she’s way more involved i work i get up to work at 10 o’clock at night i

7:04work all night long i just got out of work to come and do this so my schedule doesn’t afford me

7:09to be able to do that so i wanted to meet these people so we had them over through four or five weeks before the

7:16walk and we told them what we were doing they think we’re crazy obviously and but

7:22they still have a lot of fun i rented a bouncy house i happen to have an indoor exercise pool that’s pretty big the kids

7:28all went swimming and we had a great day and i had a chance to talk to each one of the families about the

7:34fundraising and they just said you know it’s just not for me you know we already did a birthday thing

7:41you know we just got halley’s diagnosis i don’t think we can raise money still you know

7:47how in the heck can you raise at that point i think we’re at about 30 or 35

7:52000 and i said oh wait a minute i’m not even close you’ll see i’m telling you we’re

7:57going to do fine and i sat down with kerry who’s my favorite singapian don’t tell anyone

8:02besides myla and her parents and they were so fascinated with the fact that

8:10there’s no secret everyone says what’s your secret there’s no secret you just have to ask people to help because you

8:17know what most people want to help they want to help whether they help with 25

8:22or 2 500 they want to help whether they help with one of the the guy i asked to come bring

8:28an ice cream truck to the event pz farms in waltham he wouldn’t charge me

8:34i expected to pay 1500 you know he wouldn’t charge me the people that i got the pizza truck they saved me about

8:41a thousand dollars she was very you know because it was she charged me for whatever but when we went way over our

8:49our head count we thought we’re gonna have a hundred people we end up with like 150 160. she didn’t charge me

8:54anything extra she just said don’t worry about it you know because she knew it was for a good cause the more you tell

9:00people about it the more you ask the more they’ll give to you the more they want to know what it is

9:06what is that syn gap what is that how is myla how is myla affected how is tina

9:12and ernie affected everybody wants to know how to deal with something like this and they relate it to a lot of

9:19people came back and said oh you know my nephew’s autistic or um my my son i just

9:26followed today a friend of mine his middle child is uh non-verbal and

9:31autistic and who knows maybe there’s some guy i don’t know you know because they are recently diagnosed also and

9:38people don’t even know what it is they’ve never even heard about it it’s so rare it’s not something that’s

9:44blasted up all over the internet it’s not like breast cancer like everyone gives to that you know because that’s

9:50just how it is but we need to get it to where it’s in the forefront

9:55we need syngap like with mike out there with all his things every week and all his posts and

10:01everything i wish i’m not as good as that but i’m trying but we need to have that because people need to know because

10:08they need to know what what it is and what we’re doing so this

10:13makes everyone aware and i even when we did our event and i’ll talk to you about

10:19our event what exactly we decided to do people that were there from the community that

10:25you know come to that playground it was a school you know they would come and ask me can you tell me about it we also

10:31had an information sheet that we’re handing out and i would get the information sheet and i explained to them about it and told them this is what

10:38it is and you know this is how serious is and they were so moved by what we were doing you know for these kids and

10:46most people really are most people really are good at heart and most people want to help they want to give they just

10:53don’t know how to so i tried to steer them in the right direction

10:58it’s my that’s my job i feel thanks for that so the ac the actual event itself you said

11:05150 or 160 people how do you get you know for this rare disease that nobody’s ever heard of as you’re explaining how

11:11do you get 150 or 160 people to show up for something like that were these all people that you knew

11:18personally or you know i mean i think it’s people that we did a lot of us like i knew sandy knew

11:25or a lot of them were the syngap sisters they had a group you know that was good

11:30that we had all of the families from massachusetts because each of them brought with them a contingent of people

11:37with them as well but i was on for the last six weeks i went

11:43on facebook and instagram every day with some sort of a post um to join us at the

11:49walk we’re gonna have a pizza truck we’re gonna have a ice cream truck there’s gonna be t-shirts it’s fun for the kids

11:56you know you’ll enjoy this event it’s a family thing i try to really talk it up i’m not really great at social media so

12:03it was a challenge that’s not my real thing but for that month i went solidly

12:08on every you know i made a point of it and every time i was on i did not ask for money but every time i was on you

12:15know i put up the link and we often had um people donating on that during those

12:21times so that’s what i did to get them to come i had no idea how many people would show

12:27up i had no idea i me and sandy thought maybe a hundred people we didn’t do a

12:33very good job accounting but we even had our butcher from when we were kids heard

12:38about it he’s in his 90s and he brought his family and he made a donation because he remembered us from we were

12:44kids it was really cool you know because there was a lot of people out of our past ernie uh milo’s father a lot of his

12:51neighbors came which was really nice um they have a cul-de-sac so they have a close

12:57neighborhood group a lot of them came a lot of people from the produce business

13:02which is what ernie and i work in a lot of them came to support and they are

13:08those people and the people that um work in the produce industry they’re my

13:14biggest donors and a lot of people are afraid this is where

13:20we get into where you know the asking and the the money i just

13:25one of my customers a big customer who has a whole lot of money he said susan all i have to do is ask

13:31people that’s all it’s not a trick ask them most people are going to help you

13:38you just have to ask if they say no they say no then you move on to the next person but

13:44honestly all you need to do is ask and it that’s that’s the secret you know

13:51because if you don’t ask nobody’s going to give it to you and what i did if you want me to tell

13:56you peter now how i made my uh you know what i how i decided to do the

14:01fundraising i kind of have it broke down into by people that i ask in three groups

14:08i have the older people more established and for those people i wrote a letter

14:15um i did the same thing last year i wrote the letter on very on good stationery i had a professionally done

14:22a printer who helped with the cost because he knows us we do printing with him i try to use people vendors that i

14:30have used before because they want to they want to do something for you that’s their donation

14:36right there they can print the letter and they don’t have to pay for you know you don’t have to pay for it and i did letters

14:42to about 150 people then phase two or part two

14:49there’s the middle people the middle age like that 30 to 45 year olds i emailed them i emailed

14:57them the letter but in the email i also did a personal you know plea and what have you but

15:03there’s a lot of people they don’t read their mail it’s junk mail to them i made sure the envelope was nice whatever you know

15:09hopefully it’s not junk mail but i emailed them because that’s how they

15:14communicate that’s just how it is i mean it’s a three-tiered thing

15:20the younger people the 18 to 30 all on facebook instagram social media

15:29it you know i don’t tweet i guess i’m gonna have to tick tick tock i’m a tick

15:34talker me and emily milo’s sister did a tick tock but all of that that’s how

15:40they communicate and i also that’s why we did a venmo because a lot of them they don’t they

15:47don’t write a check they’re not going to write you a check they then mode so one of my promotions one weekend was if you

15:53venmo me from saturday morning to saturday night i’ll match you i had a certain amount that i was going to give

15:59might as well make it work for you and on that day i don’t know it was like 1800

16:04extra that i maybe wouldn’t have got but people want to make me pay because they i’m sure they all think i make too much

16:10money so it’s like hey make her pay make her pay so they then mode but a lot of people then mode uh that’s one thing

16:18that you know it’s changed over the years everyone just just write a check now they use a credit card which you

16:23know obviously or they now there are some people that still write checks but the credit card and the venvo is huge

16:30now it’s huge so i i reached out three different ways

16:35the the letter the email the social media and i kind of have a feel for who’s going to

16:42give for you know in each group and i think a lot of

16:47i think the first year when i did it i kind of missed the boat on the social media even though i did a little bit of

16:54it but i mostly relied on my letter writing skills and what have you so

17:00what do you touched on two key things there i think the match i think matches are an excellent strategy

17:06it really encourages um you know your donors to support you you’re you’re gonna be doubling what their donation is

17:13and so that that i think drives just more donations in general and then and then venmo you know making

17:19dona donating as easy as possible for the donor is really important and it’s really

17:25smart to think about it in kind of age groups like that and what’s going to be easiest for them or what’s going to resonate with them

17:31you know i love kind of the age groups and having something physical going out to your your older more established donors um

17:39having email communication social media for your younger donors as well so those are both great suggestions

17:45um i also i also think peter that for the old and i shouldn’t even say just older but one thing i realize a lot of

17:53parents obviously have to work and a lot of them are both parents work but some of them just want parent works and soft

17:59in the father they i think they kind of just let it go all

18:05these people they meet day to day in the business world those people they have money to give

18:13and those companies are the ones that have the big money those are the people

18:18that we have to continually go after and that’s who i’m going that’s where i’m going to raise my

18:24game for next year i’ve already put in place a few things where

18:29you know i’m doing some things with some of my customers or some of my vendors

18:34that i can raise up the amount for next year because

18:40those are the people who have the money you know those more established people they they have the money you know you’re

18:46you’re gonna get your hundred dollars or two hundred dollars from your friend or this or that but if you really want to

18:51get the big bucks those are the people we have to really target and i’m dying to find matching i agree i

18:59mean i i that’s my goal this year is to find somebody to match us or match our first

19:0450 000 or match our first 25 000 i mean that’s how you make it work exactly i

19:10agree yeah if you’re already going out and raising the hard the hard uh you know donations and money you might as well

19:16find some sort of corporate match to double that right right agreed with you there um stephanie decker had asked a

19:22question and it was actually something we were going to kind of get into here anyway um she was saying you wrote letters can you be more specific who do

19:29you write the letters to did you just tell your singapian story do you have the actual letter i have the letter if

19:34you want to read it i’ll gladly don’t mind sharing you’ll see how i go through it and i i

19:42mean i i take it personal uh you know i tell my story a little bit but you’ll hear how it is

19:48i wrote dear family and friends first off this is the only fundraising letter you’ll receive for me this year

19:55my passion for the first for the past few years has been my sweet niece myla ernie’s youngest daughter born with sin

20:02gap one sin gap one is a rare disease affecting less than a thousand children worldwide worldwide it is a neurological

20:09disorder caused by mutation in chromosome 6. most singap children

20:15suffer from epilepsy intellectual disability lack of language non-verbal

20:20and sleep disorder ernie and tina will never hear their little girl say i love you milo will need full-time care her

20:27whole life even with these challenges myla is a very happy and endearing girl who brings

20:33us so much joy on april 30th my family along with other mast syngap families will join forces to

20:40take a lap for synga in a walk to raise money for research as i am sure you know

20:45because of the rarity of this disease funding is low almost non-existent the parents and extended families of these

20:52precious children have rallied to raise money on this day to help find a cure

20:57your money goes directly to research we have made a goal of raising fifty thousand dollars

21:04as a family to go towards helping myla and those children like her

21:09i know you’re asking how can i help first of all you can go online and make a donation on our site

21:16via the credit via your credit card we give our link sandy made a really nice easy link

21:23or you can make a check out to syngap research fund you can send it to me here at pizza villa or my home address which

21:30i put we appreciate anything you can do and thank you in advance for your support

21:35i’ve kind of made it to the point i let them know what sin gap was and i told them what i wanted their money

21:41and that was it and and i think you know you threw a couple of things in there

21:46about milo that really kind of you know tug on the heart at your heartstrings that’s the that’s the point you know

21:52and it has to you meet a girl like that first of all she’s a love she’s a little

21:58bit of a a wise guy i hate to say she has that’s from ernie i was at her house

22:03a week ago and she was thrilled to see me she was in the bedroom i said come on let’s go out and deliver she took my

22:09hand we went out walk you know it was nice the next week i was over

22:14ernie was with her so she has this habit of if she wants to be with her father or with somebody she

22:21doesn’t want you around she tried to lock me in the bedroom and shut the light off i was like thanks a lot mila

22:27so she definitely has quite a personality that’s for sure and she’s a love i mean she really is when she comes

22:33to my house i love it i have a room i call milo’s room it’s how i know that there’s a really

22:40smart little girl inside her she might only come here four or five times a year but she knows when she gets there she

22:47loves this house she walks right into milo’s room she climbs up the guest room she i put a ball pit sanny of course

22:53talk me down in a ball pit i have a teepee and she crawls up on the bed she visits with her little stuffed animals

23:00up there then she’ll come and find me and take me to the living room she wants to put the ceiling fan on then i have a

23:06carousel that all the kids seem to love because when all the singapians were over that day the carousel had a workout

23:13it’s a small one but it plays music and it lights up and it goes around it was just for christmas but milo just loves

23:19it so i never put it away and so she knows exactly where she is she knows what’s going on she’s she’s a smart

23:26little girl and you can’t help but to love her you can’t help i work a ton so i don’t get to

23:32spend the kind of time with her that maybe sandy gets to or you know obviously tina and ernie so for me

23:40the reason i did this and the only one reason is to help her because like i

23:46said in the letter she will need care her whole life and we don’t know what’s going to happen we don’t know what’s

23:51going to happen with her sister or her brother you know we don’t know are they going to be able to take care of her are

23:57they going to need help we don’t we don’t know any of that so that is why that’s my that’s what drives me people

24:04say what drives you how do you get to do this you work 12 hours a day how do you have time for this

24:09because you make time because it’s important because it’s such important work and it is it’s very important

24:16well thanks for sharing the letter that was that was a really really great letter if we can um get a copy of that

24:22we’ll go ahead and include a link to it sure in the webinar here as well

24:28the other thing we do um and i’m not you know i i feel like i’m

24:33saying i did this i did that i had a team that i hand-picked sandy was doing

24:38all that stuff and i just kind of pushed her to the side said let let me do this stuff you do that stuff whatever but

24:44then we had a team we have my friend taylor who is basically a party planner buying rights and she is an accountant i

24:51mean that’s what she does but she helped immensely helping looking for and securing a place you know i had to get a

24:58insurance policy for the day for a million dollars i mean it doesn’t cost that much like 100 or something but we

25:04have there is a lot of work that goes into planning these events so i had help and i’m sure next year we’re going to

25:11make emily do a lot more that’s hadley’s mother if you’re listening emily and you

25:16know definitely and i’ve got a and i’ve got um also a girl at work jamie lynn who has

25:23worked for me for 15 years she helped me with the letters i wrote the letter but she helped me do the mailing um and then

25:30we did a beautiful thank you card also with pictures and um she helped with the

25:36mailing she did all this the stickers we’ve developed now a mailing list over the last um sandy has the the

25:44thank you note which i will also read um because i think that’s important and i

25:49had two photographers both friends of mine one was one of my mom’s good friends and one is my best friend i had

25:55two photographers that day and they took a ton of pictures videos everything so

26:01that we can document the day and people are still coming up and saying what a great day it was they can’t wait till

26:07next year and we’re going to really push it next year because i want even more people i want a bunch of people i want

26:14it to be a big deal one place we fell short and we’re gonna put i think i might probably put emily

26:20in charge of this next year we need to get on the news i know it’s not a big deal you know

26:26but it is a big deal because that you know and i know she knows somebody so

26:32i need to get on the news we need to and i know i know we can you know i have to start a

26:38little earlier but i want a news crew there that day and i want them to see hey look look

26:44what this family of nobodies did look how much money they’ve raised i

26:49want them to say in in three years on her third walk they’re already raised over 250 000 for this you know unknown

26:57disease i want that and i think that we can do it and you know i just thought of a thing right now one of my biggest

27:04donors he is really good friends with a guy that runs phantom gourmet and i just

27:10thought of it right now it just came to me so i’m going to write a note so don’t forget and i know he can get me hooked up with somebody you know i just i’m

27:16thinking who do we know who we want but i really want a news team there i want to be on the news and i want to be in

27:24print or something not for myself because i really i know you think that i’m like but i’m not i don’t want to be

27:30that center of attention person i want milo to be and said i want hadley to be front and center i want the syngap

27:37sisters elsie and lily to be there and the little boys i want them to be the

27:42people on display you know i want kerry to be there because it’s really

27:47you know it’s that’s the important thing and i want them to see that these kids are are vital members you know of our

27:55society and they need they need their support i want that to be and so that’s one of my goals for next year and and

28:02also to raise more money obviously but that’s one of my goals for next year

28:08so it seems like several families were able to put together some sort of large group for an

28:14awareness event for sprint person gap but but going out and asking for money kind of takes it a step further

28:22how do you how do you set the tone do you think it’s through the letter that you’re you know making it um you know

28:27obvious that that we need to also fundraise at this event how do you kind of set the tone that it’s more than just

28:33an awareness event when you’re getting this group together well because it is and i make sure they

28:39understand that um i’m not shy about asking for money and i don’t think anyone with a sin gap

28:46child or niece or nephew mile’s my niche not my daughter i don’t think they should be shy

28:52because everybody asks you for money all the time how much do you get

28:59um how much do you how many letters do you get how many emails do you get asking

29:04you to make a donation make a donation to this make a donation to that you know we also had a cool flyer

29:11that i don’t know where we got it but we it was great i had my printer print that

29:16as well that told a lot about syngap so people knew what it was and we made a

29:21point to tell them you know in the letter i make a point in every single post i said this is a rare disease the

29:28parents i tell mike’s story about how he quit his bazillion dollar a year job you

29:35know it gave that up so that his son could have a better life because that i mean honestly to me that is so

29:42impressive i i can’t even imagine doing that i really can’t you know i think i’m one of those

29:47people who do everything but i can’t imagine doing that but he loves his kid so much and he wants his kid to have a

29:54better life and he wants his kid to have a better chance and i want milo to have a better chance and i want carrie to

29:59have a better chance i want mike’s kid to have a better chance i want them all and peter’s son you know i want that for

30:05them i i it kills me it just honestly it does it kept me up at night thinking about it

30:11when we were going through the stuff with myla and i’d see ernie at work every day and i could see the stress and

30:17the pain on his face not knowing what’s wrong and not you know and i’m sure you guys have all been there and it just

30:24breaks your heart i mean that you know and then thinking geez how does my brother

30:30have a child at the time there was only 300 or 400 kids at the time in the world

30:36how does my brother end up with a little cingappian how how does that happen you know obviously

30:42everything happens for a reason whether it’s a good reason or not but with ernie you know it happened and now

30:48look what it’s done you know it’s definitely brought our family closer for sure our parents are both

30:54gone and we all work for this one cause you know for myla we all do it as you say

31:01our team name moving from isla not just team to villa moving for myla and we all want better for her we all want

31:09her to be okay we want her to have a better life and all the singapians so we made it

31:16clear to everyone through the letter every time i was on social media every

31:22email i sent and i started making phone calls for people that didn’t donate to me that i thought should have

31:28then jamie lynn was good at that she would give me the list call this one call this one i will say their names

31:34call this one you didn’t get a check from him yet you got one last year call him call him i mean it was crazy i

31:40assume that you set a goal as well and that probably helps drive you know donations 100

31:46i challenge myself i challenge myself in a lot of different ways but in this one this is what i i

31:52wrote a little when you guys said will you do this and i told sandy absolutely not i’m not doing this this is

31:57ridiculous no one’s going to watch nobody cares about what i have to say so then when she made me do it i wrote

32:02myself a little list and the things i wrote as i wrote number one and it’s the most important i challenge myself

32:09i believe in the sin gap the srf and all it stands for i worked with a team that

32:15i hand-picked i started early and that was a big thing we did start like january i mean i

32:21started getting with jamie lynn and i started behind the scenes making sure we had our mailing list doing all that i

32:27wrote my letter early i mean i started early i developed the mailing list and i

32:33identified my donors it was more people than the year before and next year will be even more people i wrote the letter i

32:40started with the emails i started the social media and i start talking it up i

32:45ran those weekend promos i challenge one big donor that i have the one that knows the phantom gourmet

32:52guy last year it’s just because just the kind of guy he is he’s one of mine and ernie’s

32:58customers and an absolute great guy and for the brain tumor walk he used to

33:03donate bananas and oranges and waters and whatever because at first it was a

33:09very small walk you know now more people but he i i

33:14challenged him and said you know i want you to this is last year

33:19i want you to make a donation whatever you do ernie and i will match you i figured to give a thousand dollars

33:26is 2500 i was like oh brother not to give twi i already gave my donation now i get another 25. now ernie has to

33:34so or you know what it might have been more this year i don’t want to tell you the

33:39number but he only did it so that me and ernie would have to do that number two and i’m scared what he said i said i’m

33:45not this whole early this year i’m not donating until we ask him first to the match i’ll go broke i’m not gonna have

33:52any money left because this kid i think he does it just so ernie and i have to pay it’s like kind of a game you know

33:58and he’s a better very generous person but that was the other thing and i’m gonna do that with more than just him

34:03there’s a couple other people that you know i want to challenge as well

34:09i was also on a little personal journey this past year um on losing weight and i

34:15lost i told three people i said i when i hit 100 pounds if i if i hit up i want

34:21you to each give me a thousand dollars for the sin gap i did and that was part of

34:27our donations as well so they gave me that now i can’t lose another 100 pounds this year so i got to come up with

34:32something else but we’ll find something and i think the whole thing with inviting i also i i got off track but we

34:40planned the event i made the t-shirts i got a guy that you know his t-shirts were half the price but they were

34:45excellent t-shirts but he had made t-shirts for another friend of mine who uh lost a child and he has an event so

34:52you know he helped us i look for people that could help us that could cost me the least possible to put on an event

34:59not that i’m cheap because i’m the furthest thing from it i want it to be a nice event but i don’t want to paint so much because i want the money to go to

35:05singapore um i constantly followed up with people who hadn’t responded which was a big deal and jamie lynn was very important

35:12with that once we got down to the last couple weeks she’d be emailing these people sending them another letter we

35:18didn’t care you know and i don’t care if they’re saying she’s a pain in the neck i don’t really care if they donate

35:25that’s all that matters and then we invited all the massachusetts families to our house you know my house because i

35:32wanted them to see that they can be involved too because they couldn’t believe it they’re like how do you do

35:37this i can’t believe it you know and um it’s not that hard it’s actually fun i

35:43had a lot of fun doing it i honestly can’t wait to do it again and i made a point to only you know i’m not going to do a

35:50bunch of charities this is my charity now this is my thing this is what i’m

35:55going to raise money for until they don’t stop raising money for it this is what i’m gonna do you know

36:01and i don’t because i don’t like when you have the people they ask you for this then they ask you for that then yes

36:07you know make one thing believe in it which i do obviously and and make it work for you

36:13so that’s what i did i think that’s another good best practice to call out and something that you mentioned in your appeal letter was

36:19that you’re only going to contact them one time for a donation this year so they don’t

36:25they know that this is the one event that you’re that they should give more on right exactly exactly even though you

36:30know the parents fatigue over time by asking and asking and asking so exactly the parents they can do the little

36:36birthday thing you know they can do that they’re parents i’m not you know and so i don’t have to

36:42do that this is my thing this is what i’m gonna ask for you know i still did

36:47my little splash for singap videos yesterday and you know i do i still put

36:52out there because i want people to stay aware i don’t want this to go out of the forefront i want people to know it was

36:59funny for a new old friend that i haven’t spoke to in 30 years contacted me the other day and he

37:06emailed me i mean texted me whatever inbox whatever it is and he goes hey what’s this sin gap anyway he goes

37:13that’s all you have on your instagram and facebook and i said oh it’s nice that you asked and it ended up he had two autistic

37:20grandchildren oh well so yeah but he had no idea i mean never heard of it and

37:25so you know he’s what’s that sick but it is all over and that’s what it is that’s

37:30who i am and that’s you know i don’t apologize for it i don’t care and i don’t mind asking i

37:37don’t mind you know i don’t look as at myla as um a handicapped child or whatever i

37:45don’t know all those words i don’t look at her as that i look at her as someone who’s wakes up every day and is meeting

37:51the challenges of her life and this is the life that god gave her but i still

37:56think we can help her you know and i think that you know raising money is the way to do

38:02it that’s what i can give at least you know because

38:08i it’s it’s all i can do it’s all that i can do and that’s what i’m gonna continue to do

38:14so susan you talked about setting goals and i know we discussed through the process we

38:21probably changed your goal about three times so can you talk about

38:26what it feels like hitting your goal and then how did you decide to set another goal

38:33honestly it’s exciting it really is you can’t even imagine

38:38i couldn’t i honestly didn’t remember what we raised last year i thought it was forty fifty thousand but you know to

38:44me that was good i mean i’m not saying it wasn’t good it was great but i knew in

38:50my heart even though i set a goal i said it was 50 000. in my real mind it was a

38:55hundred thousand all the time because i really thought i could get there i really did

39:01uh and when as if we went on and went on i was like yeah we’re definitely going to

39:06get there we’re going to get there when we were close i called one of my uh a guy that does my trucking for me

39:12and i said look robert you gotta do me a favor we’re like 1200 away you think that and he’s like sure sure

39:19give the girl the information he put a 1200 and then we still got a couple thousand afterwards but i wanted to hit

39:25it i wanted to beat it i wanted to just i could taste it i was like we have to make a hundred thousand dollars and i

39:31was like come on caitlyn put the checks in i want to see it i wanted to see on the site that it said a hundred thousand

39:38dollars it’s a great feeling to be able to do that for my niece it’s so great i mean it

39:45feels it feels better than anything it really does it does

39:50it’s it’s good and i think people that raise money will tell you that and honestly i have been

39:57recruited heavily first when i was doing my mom’s fundraising and now these two years

40:03every single time i’ve been recruited by a couple people come work for me we for the jimmy fund come work for us i want

40:10you know like no i i’m raising money for something i believe in and honestly the fact that and this is a

40:18big thing that you need to use what in your fundraising the fact that

40:23you are raising money for a a research fund that doesn’t pay the

40:30boss they don’t pay the board of directors nobody gets paid

40:36that is huge and whether or not that changes it might change it might not but

40:41that’s huge use that and i used that and i told every single person that raised

40:47money i’d email them back and i think and i say you know what all this money a hundred percent of it goes towards the

40:55grants they’re gonna give for research for these kids nobody’s getting paid there’s nobody

41:00like in the pan mass challenge that makes 2.7 million dollars to raise money none of us nobody’s paying us nobody’s

41:07paying any money everybody every penny goes towards these kids and you really need to use that

41:13towards your advantage because there’s not many things like that out there at all i mean

41:19not none that i know of none last question from my side and you’re starting to touch on it here around

41:25thinking donors and follow up can you talk just a little bit about what that looks like if you want to share your letter you can

41:31otherwise we can we can share the link to it after the fact as well i can share the link to it it’s a brief one

41:38i wrote um i did write a card and i do a nice card i don’t just you know because

41:44a lot of people whose homes i went to afterwards it was on the refrigerator it was really nice and i thanked them and i

41:51it’s so we’ll put on the thing it’s all the family and it’s all we put up all the families of all the of the kids

41:58i wrote thank you for your generous donation to sin gap research foundation um the founder of the sin gap research

42:05foundation is a dad of a sin gap kid he started the sin gap research foundation

42:10with hope for a better life for his son is that really true did i make that up

42:16oh srf i wrote sf rf sorry 100 of your donation goes to research and that’s

42:22where i put it as the srf is made up of all volunteers who do not take any pay

42:27team to villa raised over a hundred thousand dollars to put towards a grant so that we could hopefully find a cure

42:32thank you for your support and generosity without you this wouldn’t be possible with gratitude the tavilla

42:39family but i didn’t just send them out i hand wrote their name i have 20 left to

42:45do i’m going to do them when we hang up oh no i forgot to bring them back from work and i wrote a little note to the people

42:51telling them how much i appreciate it the people that came i told them thank you for coming we hope to see you next

42:57year people that didn’t come that i thought you’d come i wrote thank you for your donation please join

43:02us next year i know your kids would enjoy it i try to write a little personal note on everyone that i sent

43:08out uh is it time-consuming yeah but is it important i think it’s the most important i think

43:14it’s very important to thank people and not just on facebook and not just on instagram not just an email a real

43:21thank you card and you don’t to be i mean you don’t have the money you don’t have to be elaborate like i said i got a guy

43:28i have a lot of people that do stuff because i do for others i am a philanthropic

43:34person when you ask me to donate i donate because you know if islam is not something that’s i’m not really i really

43:41can’t get my head around but that’s why people also

43:46donated to our thing that’s another reason you know if you put yourself out there and you’re kind even if it’s just

43:53a kindness that you give to people not money people if they have the money they’re going to do it for you so it kind of you

44:00give what you get what you give so i think that’s really important an important part of it

44:08for that susan that’s great uh i’m gonna i’m gonna jump in a little bit i see there’s a hand

44:13raised from denise to villa another tavilla you guys are everywhere

44:19yeah we are denise i’m going to click allow you to talk if you want to ask your question you got but you’re muted

44:27you gotta unmute yourself i just want to say can you hear me yeah

44:33yeah i just want to say how proud proud proud i am of susan she worked so hard

44:39everybody’s worked so hard such a great cause and myla is my son’s little sister

44:47so i just want to tell susan this is michael’s mom denise is michael’s mom

44:54thank you denise love you so proud of you thank you thanks denise and i i want to um i want

45:02to chime in i’ve been taking notes and listening susan um i want to echo what peter and and caitlyn have said in terms

45:09of thank you for your leadership on this it’s this is we’re going to re we’re going to we’re going to retitle this whatever we call this webinar we’re

45:15going to retitle it master class in fundraising and um

45:22i you covered a lot of stuff and i agree with all of it i one of the things i

45:27didn’t hear you talk about is explicitly because i think it’s just in your bones

45:32but you by doing this now you’re in the two-year second year you’re already talking about

45:38the third year you are in addition to raising money which we need to keep doing this

45:43important work you are raising awareness right everyone you’re asking about for money they’re like what is the singup thing who’s got sing gap what’s up with

45:50milo like so can you just talk a little bit about how you’re

45:55raising awareness broadly and then in the same along the same vein the other thing

46:01um and i mean emily if you want to chime in on this too you’re also building community right

46:06like this event is a fundraiser but by saying this is the boston thing come sing gap sisters come emily and hadley

46:12come whoever else is next like you’re and you’re also creating a a community amongst the singapians and amongst the

46:18people who love and support those families which i think is also precious so any thoughts on those two things

46:25community i definitely agree when we were getting ready to do our walk and i know you

46:32touched on it in one of your podcasts everything happened organically believe

46:38it or not i gave a little speech next year we’re gonna have a microphone because nobody could hear me and that’s how many people were there

46:45seriously i gave my little speech and i asked my niece emily who is milo’s older

46:52sister she’s eight years old mind you remember when you were eight and

46:57and i asked her and kerry if they would start the walk everly walked up to kerry who’s 15 at

47:05the time held kerry’s hand

47:10and walked around the circle sorry but i was blown away how this little

47:17eight-year-old knew that she should take the lead of this little cingappian girl who

47:24is awesome but she didn’t let go of her hand the whole way

47:30and she really showed us all of us older people all of us that are there hey

47:37i’m here to help take care of kerry to take care of my sister myla i’m here to

47:43do that and guess what you people should all be doing that too and it was awesome it was an out of body

47:50almost experience i had tears in my eyes thinking about it and i know mike had touched on it

47:56because he noticed it too but that’s exactly exactly what we’re doing like i said to sandy i can’t wait

48:03to have everybody over again and i’m thinking of what we’re going to do we saw somebody have a foam

48:08party we want to do a phone party now you know i can’t wait to have everybody over again i can’t wait to build like a

48:16you know a relationship with these people that you know are in our state and i i’m excited about

48:24it because i want them to know you know what if emily needs me to run over and

48:29watch hadley even though she admires a little i don’t know the brother loved me but happy was the jury was out she liked

48:36my niece a little better because she was making slime but you know and and it was funny because this uh what’s the sin gap

48:43sister’s mother’s name elise aaron aaron erin goes how can you have these people over your house what are you crazy i

48:50said i don’t care and it doesn’t matter because her daughter was throwing cups around and doing this who cares they’re

48:57cups i don’t care they’re having fun they had a good time those things don’t matter to me we were building definitely

49:03building a community that i hope to last you know for as long as we can have it last

49:09i just think it’s important and then emily you want to add to that i invited yeah i want to chime in that

49:14the community and the support um specifically of the boston families because we’ve all

49:20um through susan’s help specifically gotten so close the event was unbelievable my

49:27family and friends are just astonished that like hadley has this really rare you know

49:34thing going on and that there’s a community in our neighborhood you know essentially and

49:40it’s just fantastic susan is a force she’s amazing

49:45i’m so happy that she’s getting to speak today because everything she’s done is like just

49:50incredible um as far as the phrasing and supporting the kids and just being so

49:56honest and um heartfelt you know like she’s so genuine

50:02and i think that’s the real piece that strikes all of us to come together emily emily since

50:09you’re here i have a quick question for you because i know you did a fundraiser before but it i started putting the

50:16timeline together while we were here you didn’t start really fundraising for sprint person yeah

50:21until you probably met susan if i’m doing the the timeline correctly so what is it

50:29that like even susan said to get you to fundraise and convinced you to raise more money even though you just in the

50:35past few months before that we’re raising money yeah so that what that was an obstacle

50:40for us because we had just had a fundraiser when hadley got diagnosed um and we had raised a lot of money so it

50:46was a little hard to ask you know a month later for money again but there were people um

50:53and i think some of you know but my niece also got diagnosed with leukemia so my sister had a fundraiser my twin

50:59sister so we were you know stretched a little thin as far as asking for support but people still came out um i sent

51:06flyers um the beautiful flyers that they had made i put in the kids school bags and

51:12i mean not only did we get you know additional fundraising but the awareness piece like i feel like so many new

51:19people learned about syngap there’s so much more discussion about it in my community

51:24um so yeah i just continue to ask like susan said you don’t get what you don’t ask for you

51:30know you have to just be willing to put yourself out there um i probably didn’t do as good with the follow-up as she did

51:37but that’s you know i’m gonna take some of my first little kids

51:43and that’s the genius of that’s the genius of an annual event right i think i think a lot of like sprint for singap

51:49is an annual umbrella event but you guys are making a very special thing in boston i think i i hope and expect that

51:55our community will learn from you and copy you everywhere and it’s about funding community and awareness and i just you know susan you

52:01said fundraising is all i can do that’s not true um respectfully i think you you know you you like so many to villas i

52:08don’t know what they give you guys as kids you know you bring a lot of heart and a lot of passion to this and it’s in

52:14and you’re very much part of the the community in boston and and i think that’s that’s really magical i want to

52:20make two more points and then we we’re almost at the hour one of them is in addition to emily you know emily gets

52:25newly diagno recently diagnosed right it’s all is going on the sevillas are hosting this wonderful event suddenly

52:31emily’s community gets to come and be like wait this is a thing look at what’s going on and that i think is

52:37brings people in and that if you listen to my podcast you know i’m always saying to people like i think two podcasts ago i was like don’t just hold your kid and

52:43say we’re gonna get through this that’s the right that’s everyone’s first instinct when they get told their child has a terrible disease and it’s exactly

52:49wrong because what you need to do is open the doors and invite your community and let them see what your life is and that you need help

52:56and so your event any physical event is a way to do that but the other people who showed up this

53:01year was was a few representatives from stoke therapeutics and that is a really big deal right so

53:07drug comp the way our kids are going to get better is drug companies are going to make drugs and so when they could show up and see

53:13hey meet the patients and then meet the families and then see the community and at the end of the day companies are

53:19not you know monolithic they’re run by people and when people come and they connect with other people

53:25and their hearts are tucked and their hearts are touched that that deepens the connection between

53:30that company the leaders in that company in singapore so i think that was a huge win that none of us saw coming and you know

53:36you should you should take a victory lap on that and then i’m thrilled to hear you talking about news and media next year because again it’s about

53:42fundraising and we need all the funds we can get there’s so much good work to do we’re doing it right emily and awareness

53:48yep we are cool i got some ideas i can’t wait to hang up

53:54because yeah all right it’s a wrap let’s stop jesus got it right just just so you know mike

54:00i said to sandy i thought it was 10 minutes that i had a talk but i guess we filled almost the hour so you’re a

54:06tavilla um i love this family so that’s

54:13um that that’s all i had to say i i just wanted to emphasize the community and you know it’s going to grow

54:19more and more kids are going to get found warmer kids are going to get diagnosed and what you guys have built in boston through this event and through

54:26a little bit of the tavilla magic um and now the barnes magic and the singapore sisters and you know neil and

54:32everybody it’s just it’s just wonderful to see it and i’m so i’m so happy so thanks for doing this susan this really was a

54:38master class in terms of you gotta ask you gotta follow up you gotta let people know what’s going on

54:44so um emily susan any closing and then peter caitlin any closing thoughts

54:50just one thing you know you had asked about the awareness thing the thing that’s behind me this background we made

54:57these flyers well taylor that worked with us she made these flyers and i had them all printed

55:03and i’m going to tell you something these a lot of people oh i want another one they really liked them and then we

55:09had the information flyer about singap that we also had at the event and i and

55:14i also enclosed that in every letter and a lot of people came and commented about how oh that was great i knew nothing you

55:21know they didn’t know about it but so i think the information definitely is a big part of it mike like you had asked

55:27me you know the awareness because next year i’m gonna go and start putting these flyers

55:32up places you know i know a lot of people and more people than i probably think and i know they’ll put it in their

55:39storefront or wherever because everybody everybody’s on board you know and i’m

55:44gonna i’m gonna keep the awareness up i’m not gonna just take a nap now for six months i’m gonna keep the awareness

55:50up and just keep going and that’s what i’m gonna do because we are gonna blow a hundred thousand next year 100

55:56we will make mark my words caitlyn i might put a hundred on the first thing but

56:02we’ll be changing it it’s okay maybe two we’ll be changing it for sure we’ll be changing it for sure because after three

56:09years i i want my total not to be 250 i want it to be with a three in front of it so

56:15i’m definitely going for it this next year go big or go home i know you can do it if anybody can do

56:21it you can do it thank you so much for all of your wisdom and all of your words and and uh bringing it to

56:28others on how they can do it because i think that’s the biggest question is how can i do it and i think it really is

56:34my pleasure my pleasure i was nervous but i hope you couldn’t tell so oh no you’re great thank you susan so

56:40much we’ll meet you peter you as well we appreciate you sharing all of your process with us and all of your best

56:46practices we’ll share your appeal letter your thank you letter and your flyer along with the webinar here as well but thank

56:53you again for making the time for us today and sharing with the community thank you thank you

56:58have a great day everybody bye emily see you soon bye you’re the best