Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten involved in supporting PWS research, generating hope for themselves and others. Click below to watch the video, or scroll down to read a transcript of the session.

 

Getting Involved with FPWR Fundraiser Panel

Sarah Peden (SP):

My name is Sarah Peden. I'm the Director of One Small Step Community Development for FPWR. It's because of all of you who have donated, hosted a fundraiser, served as a volunteer, and participated in clinical trials that we are able to be here today. And it's because of these efforts  that the FPWR research team was able to be up here talking about the next steps in research. We've a very aggressive goal in mind and it's going to take all of us to get there. In this session we're going to talk about some practical ways to keep that momentum going. 

Panelist Introductions

Each panelist: Please  give us your name, an overview of how you've been involved with FPWR, and what inspired you to take action.

Theresa Walker:

My name is Theresa Walker and, I have been involved with FPWR since Emma was like four or five months old. Someone, once we shared her diagnosis with the world, someone that I went to college with just happened to go to high school with Sarah Peden. She messaged me immediately and said, I know someone that has that. And then Sarah said, Hey, let me tell you about this foundation. And so we were hooked, line and sinker. And we have been fundraising ever since Sarah convinced me that I could host a walk too, and we have Emma who's six.

Natalie Brennaman:

Hi, my name is Natalie Brennaman. I am mom to Evan. Evan is three. When Evan was nine months old, we attended our first One Small Step walk. And again, Sarah convinced me to get involved. After the event she said, Hey, do you want to host? And with absolutely no fundraising experience or host experience, I maybe foolishly said, yeah, well we'll do that. So, and again, we were just hooked. And so we've been hosting One Small Step, Theresa and Sarah and I. And then we've also done a lot of fundraisers, we've done woodworking shops, we've done a lot of online. We did March Madness and a Baby Bit, and we do birthday parties. So we've done a little bit of everything and we love being involved with FPWR!

Josh Gilliam:

Hi, my name's Josh Gilliam. We have Jackson, who is nine. My wife and I are fixers, right. So when we learned that we could not just pop a pill and fix this thing, we wanted to do whatever we could. And so we've been helping host walks as well as we hosted a gala a couple of years ago and basically just whatever we can. To those who think that you can't just keep asking, all they can say is no. 

Becky McWilliams (BM):

Hi, my name is Becky McWilliams. My son Kieran, who has PWS is nine. I think I was ‘volun-told’ by Tonya and Susan when he was about one to get involved. So we planned a One Small Step walk that led into four years of One Small Step walks, which led into four years of Gala's with my co-host Sam Chipetz. And a couple of other races. And we'll probably talk more about it, but I'm sort of in the mindset of, it's hard to ask, but people usually give, they just want to be asked. And my motto is ‘go big or go home’.

Brent Snyder:

Hi everybody! My name is Brent Snyder, my wife Renee and I have been involved with the FPWR for about seven years. My daughter Peyton is seven years old. We got started right from the get go with attending a One Small Step event when our daughter was born. Renay and Tom Compere, if they're in the room, we went to one of their One Small Step events when Peyton was just diagnosed. And just felt really great about it and we grew our fundraising experience over the years. We decided to have our own One Small Step walk a few years ago. And then last year we did a golf tournament. So we've just naturally have progressed our fundraising and tried to make it bigger every year.

 

Directed Questions to Panelists

SP:

One thing I like to talk about is hope. We have this hope and hope for the future. Hope for a treatment, hope for this, hope for that. But what is hope without action? It's just a dream, right? We want this to be reality. Every one of our panelists have taken some sort of action to turn their hope into a reality. So let’s talk a little bit about how that looks practically. So first, Becky.  Becky has hosted multiple One Small Step walks and multiple gala's. She's completed multiple endurance running races and has sold Live Life Full necklaces. You might've seen some of us wearing them!  Becky: how do you balance fundraising, all these different events with family and a full-time teaching job?

BM:

How do I balance all of it? Well, I am naturally one of those people that just sort of gets off on doing good and doing stuff. So I think, there's a few ways. One is working with people. Having a co-host or a comrade, a friend, someone, a family member who's willing to work with you, I think is really important. Pulling all of your resources from people that love you. I mean, I can imagine everyone in this room has a huge network of friends, families, colleagues that want to give and want to help, but don't know how to. I am always amazed.  I just ran with my oldest son (who doesn't have Prader Willi) a 5K to commemorate my son Karen's upcoming 10th birthday. I couldn't believe how many people were donating and thanking us for doing it. People like Jackson's twelve-year-old friends and their parents, my colleagues, our family. They were saying ;thank you so much for doing something so we can give to you’. And that I was really taken with. In terms of the balance... We all have a lot going on in our lives, but I think it's relying on support and help from other people, not trying to do it all by yourself. And reinventing how you fundraise, like I think you more inner strength and balance to move forward when you're energized by the work you're doing. So changing it up has always really important for us. And finding fun, I mean, I know Sam and I, that plan gala's like, we throw parties, and it's fun and it's hopeful and people dance and they drink and they eat and they bid and it's really, it's exciting and it's fun, and I think that helps me sort of drive the fundraising forward.

SP:

Theresa and Natalie, you guys have been doing this walk together now for three years together? I think we started two years before that, so it's been going on about five years now. Tell us about how you work together to host your One Small Step walk. How does it benefit you to have a co-host? And how do you split the roles so that you're not bearing all of the weight of the event?

NB:

Delegate, delegate, delegate, tell other people to do the job for you. It works great. We've got a great network of family and friends. They want to get involved, they're happy and excited to get involved. So we form committees and assign tasks, and it's great. So, one of the things that I tend to do is the silent auction. That's my role with our One Small Step walk. My husband Blake usually does all the media stuff like photography and video stuff. And Theresa, I'll let you talk about what you do.

TW:

So she's totally right. Everybody wants to help. They want to have a job, and they're just going to wait until you give them one and then, they just go do.  We've never had a problem getting volunteers. We've never had a problem with attendance because, just like Becky said, they want to do something. When you get this diagnosis, as a parent your immediate thought is, okay, how do I go out and fix this? The same thing is true for your friends and family. They want to help and this gives them an opportunity to do so. So we're happy to delegate. We start asking early and let our friends know that  if their company might sponsor, we can get them on the back of the t-shirt. We look for any one that we can ask in any different way.

The walk  takes place in my hometown. Natalie and I live maybe 15 minutes from each other. Sarah lives less than an hour away. So we're really able to also pull from our individual communities and then come together as a whole. Natalie usually does a lot of the silent auction stuff and it's always been a big hit. Since the walk right in our backyard, I usually recruit the volunteers that come and set up. Then Sarah provides a report to our attendees in real time. She says  ‘this is what we're doing with your money.’ It’s like an instant return on investment for our supporters. It's amazing to have a co-hosts if you can wrangle people in.

NB:

And I'll add that I'm definitely a shy, introverted person and soliciting money from people is not something I ever dreamed I would do. It's way out of my comfort zone but I figured out how to do it, so you can do it too.

SP:

And I will say also when Theresa approached me, I had been hosting I think two or three, One Small Step walks in Bloomington and I told her, we should do this in Avon because we have a lot of families in the surrounding, Indianapolis area and I think it would be easier for them to come to your location than to mine. And she was like, I can't do that. And I was like, yes you can. You really can. It doesn't take much. It just takes one person to be willing to drive the ship. But like they said, delegating, delegate, delegate, delegate. People like to be involved. They just want you to tell them what to do. And so we've noticed after several years now, we don't have to rewrite the script. We just do the same thing every year and it's successful and people come out and we have a great time. 

Not everyone's Small Step looks the same. Not everyone's Small Step is even a walk. So a lot of people are surprised when they hear that. I have not seen two One Small Steps that look the same. So it's definitely something we'll talk about, you can turn it into your own. It's pretty easy to personalize a walk based on what you like or what age group your children are in, what their interests are.

Brent and his wife, Renee, have hosted several One Small Step walks over the past few years. Brent, tell us about what inspired you to include a second event annually and what does that look?

BS:

Craziness. We started doing a golf tournament a couple of years ago. I'm in the business world so golf tournaments are natural fundraisers. I’ve personally been to a lot of golf fundraisers. I see how effective they are and, in my mind I was thinking, why, why can't I do something like that? I like to golf, so that's a big plus, my friends like to golf and so we started it just kind of on a whim. It ended up being a great event and it was different. The One Small Step walk that we do, usually around March, is a family oriented event where we have families, parents, kids. It's a two hour event. It's usually on a weekend. And it's great because our friends who have kids, they love bringing their families out so they could kind of teach their kids about, you know, charity and volunteering. And so we decided to keep that, but we felt like maybe one more adult focused event would also be fun. So we just jumped in with a golf tournament. We hold a golf tournament and afterwards we have a dinner with a silent and live auction. A lot of the money we raise comes from the golf itself, but most of it is through the dinner event. It allows us to engage our community and sponsors in a different way.  So people are excited to spend a day out, an evening out and have some fun. So that was why we did kind of two separate events the past couple of years.

SP:

Can you tell us a little bit about the support that you received from the Foundation and from Jackie in planning your event?

BS:

Oh yeah, absolutely. Jackie, she walks on water as far as I'm concerned. She's awesome. Such a great support. Jackie is the national events coordinator, so she's doing all the different events going on across the country and I know she's got a lot of work on her plate, but she's awesome. She provides us with a website for our fundraisers, an event page, where people can register and can sign up to get more information. She helps coordinate a lot of the things behind the scenes for us. Because or tournament has hundreds of people , she attends the event to provide ‘boots on the ground’ to help people make sure they're getting registered and help people check out with their items  after the auction. So there's a lot of support from Jackie and FPWR.

 

SP:

Last year we were really fortunate to create a new website platform to conduct what we call DIY type of events. These events range very broadly. They could be car shows, spin classes, concert fundraisers, wine nights, non ticketed events. I mean, you name it.  Josh, can you tell us how you've used the DIY website to help you with your fundraising efforts?

JG:

The last couple of years have just been completely insane for our family so we've done things on a smaller level. And so we, we did a March Madness fundraiser and it was surprisingly easy. It literally took I think, five minutes to set up and raised a couple thousand dollars. You know, it's not my $2,000 that I bring to the table that matters, it's everyone's that helps out. So, I encourage you to dip your toes in. You can go big or go home or you can go small and move up to big!

SP:

Josh has hosted a One Small Step walk as well as a gala and then was hit by Hurricane Harvey. So there was quite a bit going on at home but he still wanted to contribute. And who doesn't like basketball and March Madness? Right? This was a great way to still keep going and connect with the community and find something fun that he could continue to do while their family recovered.

JG:

One more thing! I have a friend that works for a very large Texas-based a grocery store. And so one note: I asked her for a donation one year and she said, ‘Hey, you know, if you, if you asked me in December, I'll be able to plan for the next year’. And so she was only able to give me $1,000 bucks that year but the next year I asked her in December so they could budget that spending for the next year. And that year she was able to give $10,000. So think about things like that. I mean, everybody goes to the grocery store, you know, just go to the little desk and see who you need to talk to. 

TW:

I just want to piggyback on that too. I think it's really important to ask your pediatrician, your dentist, your insurance guy, etc. They're providing a service for you. They want to see your child succeed too. Its a strong likelihood that your pediatrician will say yes if you ask for a sponsorship. They might not reach out to you and say, Oh, I heard you were doing a walk, but if you send them a sponsorship letter, they're likely going to jump on board. You know, they know that they're still going to see you in their office. They're probably going to say yes and it's good exposure for them too.

SP:

Yeah. And those are all things that we provide to our host. So we can create a sponsorship letter that is specific to your event. We have national sponsorship letters for One Small Step. I've created flyers. I've created all sorts of letters for people to be able to use, to take to their gym, even just to do a fundraiser at the gym, a donation class. So it really, it's such a broad opportunity. It really just takes reaching out to us and asking, Hey, this is what I'm into. What can I do? How can I make this a fundraiser? 

So as a parent, I've personally had an amazing experience asking my community for help, advocating for research, advocating for my daughter. I've been blown away by the amount of people who come out of the woodwork who might not even be great friends, but just acquaintances who are empathetic and who want to get involved and help. And personally, I feel like that has helped me. It's helped. It's just helped me understand that I have a community to get through this. So on the days when it's hard and you know, PWS is weighing you down, you have people out there who want to be on your side and want to help you. So I just wanted to ask the panel, what has been the greatest impact on you personally from getting more involved with the FPWR at in this type of capacity?

BM:

I can echo what Sarah said. I also think that inevitably as our kids get older and different issues creep up, it can feel like life starts to move on and like we're not doing that much. But fundraising, whether big, I mean I joke about go big or go home, that's my own neuroses, which I'm not going to put on anybody else. But I've also done really small events as well. Like I think no matter what the event is, you just feel very empowered, like really helping your child and you're really helping the community. So those really hard days or those really hard moments, or those times where you see your child may be shifting into the next phase or something, you know, creeps up. You can hold on to this sort of empowered feeling of, but I'm working towards something, and I have all these people behind me working towards it with me. And I find that to be really powerful.

BS:

I would echo that too. I'd say by far our fundraising events are the most rewarding experiences we'll have all year. The sense of empowerment, the sense that we're doing everything we can to move the ball forward. None of the research happens without funding. Everything we've heard here on the stage throughout the past few days, none of it happens without money and the funding that we provide. And, like Susan said, it's, it's not a matter of ‘if’, it's a matter of ‘when’ we find these therapeutic treatments for our kids and it's up to us, all of us in the room to figure out how fast we want to get there. So, there's a quote that Renee and I heard, ‘it is the greatest of all mistakes to do nothing because you can only do little, do what you can’. And that just motivated us to start small, do something and then see how it goes and grow it bigger every year. So that's our motivation. It's just really rewarding and empowering and Prader-Willi syndrome is not an easy thing to deal with. But the support, like Sarah said, you'll be blown away. We get blown away every year. People that come out of the woodworks to help, and there's a lot of good people in the world and you see that you host an event, you'll see all the good, within your community, and your friendship base. So that's kind of what keeps us motivated.

JG:

It's hard to follow that but it's literally the sense of empowerment. Like you're doing something for the community. It's not about how much you raise, it's about knowing you're helping, right? It's the community. It's getting all your friends together and, to what you said earlier, people want to help. I mean, I hate to say it 15 times in a row, but get your friends out there. Everybody's got friends. Everybody knows how to do something. You know, I'm an IT nerd and I know how to do things on a computer and so blow people up on email and they respond. I mean it's, it just happens. 

TW:

I'm echoing what everyone else says, but in the beginning there's not much you can do. You know, you have this floppy baby and you're tube feeding and you can only get so many casseroles, right? Or they can only send you flowers or a card so many times. But, hosting a walk and giving people opportunities continue to serve your family, that's kind of the only way that your friends can kind of always continue to show support. You don't need another casserole when your six year old is struggling with Prader Willi, but they get that invitation to the walk and they're going to show up. And so it's just a way to continually keep people involved, and also just to answer Charlotte's question earlier, so this is our fifth walk that we just had. And, I thought the same way about, I feel so bad asking year after a year, and last year I remember they gave so much and maybe I shouldn't even ask them this year because I mean they're going to remember how much they gave. And that's really scary at first, but I don't think I've had people say no yet. You know, most people that donated year one, are still donating year five. I think the easiest thing you can do is just to keep them informed. We started a just a Facebook page, like a group page for our walk. And so when FPWR releases like something that was published or a clinical trial alert or anything like that, I just share it on our page. So they're getting constant updates in real time. And I just remind them like, this is literally because of you and I think about what Theresa Strong said about five years ago there weren't any trials. And I think five years ago, was when we had our first walk. So I'm literally thinking, well, that was my aunt Mary's 50 bucks that, you know, and it's like over and over. That was five years ago. And so compounding to this and now we're here. So it's the same for your guys and you should never feel guilty for asking, because you know, we're such a small percentage of the grand population that's struggling.

BM:

I was going to say that I think for your family, we have two other children who don't have Prader Willi, and we do everything in our power to not make our life about PWS, which I don't think it is. But I do think that having fundraising events is a really positive family event as well. As my oldest son has gotten older, he wants to get involved, he wants to run races with me, he wants to support his brother. And it's really positive and it feels like it provides hope for whole family, in a way that I didn't use to think when my kids were younger. And the walks are a great example of that because families come out and it's like Brent alluded, kids want to get involved, families want to teach their kids about charitable giving and philanthropy. And it just, it becomes a source of hope, not just for me as like mom, who will do whatever it takes for my child with a rare disorder, but for our whole family. And I think hope for a family unit is equally as important as hope for just your child, if that makes sense.

SP:

I can echo on that. My daughter just turned 10 and we've been hosting events now for nine years. And really about two years ago she asked me, why do we do One Small Step? And I told her, I said, you know your friends that have special abilities? And she was like, yeah. And I said, well, what we do is we raise money so that these doctors and researchers can find medicine to help you and your friends and their special abilities. And she really appreciated that. And she, because she has friends, she's met these people, she's met all of these friends at these events. She's met them at conferences. I think in some ways it shows her that one, she's not alone. Two, we're working to make it better. And three, there are hundreds, if not thousands of people in this world today who are trying to help her and her friends. And she thinks that's amazing. So for her to finally grasp it and understand it and appreciate it, and like Rebecca said, we don't focus on PWS a lot in our household. It's not a daily thing. It's not what our lives revolve around. But for her to have that special day where she gets to get together with her friends and celebrate, really, it's a celebration. We get together and we celebrate how far we've come and how far we're going. And she gets that reminder that she's got a community that has her back, that is special. It's special for her. It's special for us. But I think our kids, as they get older, they start to recognize that they're not alone.

Opens to questions from the audience

Participant:

Hi guys. So, you did a fabulous job in putting these people together. Cause if you asked me three hours ago about fundraising, I'd tell you, Nope, not in me, not in me. And I'm seriously considering it now. So, yay. Job well done, if that's how FPWR is ran, we're in good hands. My question is, okay, absolutely no background in fundraising, brand new recruit. Where do I go for the hand holding process?

SP:

So that's a great question. I would really encourage anybody who has any interest whatsoever to just email me (Sarah.Peden@fpwr.org) and we can start the brainstorming process. I will help walk you through, step by step, what an event could look like.

Participant:

I'm a grandma, Jayden's 10, and this is my 10th conference. And every year we're having more and more grandparents come. You kids are raising kids and your resources are going into your families. The grandparents are at a stage where we've got more discretionary income and I know nothing whatsoever about planned giving, annuities, you know, all that kind of stuff. Does FPWR have plans, has plans to hit up the grandparents? When are you going to ask us for planned gifts that could help maintain FPWR?

Melissa Demand:

Anyone who has any questions about planned giving can reach out to me (melissa.demand@fpwr.org) and I will get you all the information you need!

Participant:

Planned giving. We're dying to give!  Hi Sarah, I'm David, so one thing that has become popular in my world, there's these little pop up concerts, pop up events that happened last minute. Social media, just Venmo us a 100 bucks and then show up. And it's really, really a popular thing in some cities. My question is how do we do that so that their money goes directly to the Foundation. So they also get the tax benefit from that as well?

SP:

We have the ability to set up ticket sales on our website if that's something that you're interested in.

We just had an event where dad was well known in the area for his band that had retired and they came back to a big fundraiser where they all came together and invited everybody to come. It was a big deal that they were coming back together to do this show, and they sold tickets at the door and they raised, $8,000. It was a small concert event and they did a really great job. We set him up with a page on our website that included the event and ticket information. They also collected cash and checks at the door. I provided him with some slides so that while they were playing music, they could take a little break and show a slideshow of where the money was going. So if that's something that you're interested in, if you have connections to people who would be able to put on concerts, we could certainly do that. And then once you get it set up, you've blasted out into the media.

Participant: Can we you use the video that was shown today? 

Susan Hedstrom

Yes, you can use the video as is or you can contact me (susan.hedstrom@fpwr.org) and we can customize it for your event.

 

 

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Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.

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