If you value PWS research and want to help find treatments for PWS, join us for a panel of parents and hear how they've taken action in their own unique ways. In this 50‑minute video, active PWS parents and fundraisers talk about how they've gotten creative and raised funds for PWS research in challenging times. This is followed by questions from the audience at the 2020 FPWR Virtual Conference.
Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.
Presentation Summary With Timestamps
0:33 Susan Hedstrom begins the panel by thanking the PWS community
- In the past year, there have been opportunities for enrollment of three PWS clinical trials, two of which have promising results.
- It’s possible that within a year’s time, the FDA will approve treatment for PWS other than growth hormone, which was approved 20 years ago.
2:20 Susan presents three fundraisers for PWS research:
2:48 Sarah Peden speaks about her fundraising experience
- Works for FPWR, overseeing One SMALL Step & DIY Fundraising
- Has worked in fundraising for FPWR for ten years, she was inspired to help when her 11‑year‑old daughter was diagnosed with Prader‑Willi syndrome
3:09 Jackie Mizon speaks about her fundraising experience
- Has worked with FPWR for 5 years, and is responsible for Event and Endurance Based Fundraising
3:18 Lisa Matesevac speaks about her fundraising experience
- As the PATH for PWS coordinator, has also chosen to have become a One SMALL Step volunteer host over the past six years
4:10 Susan Hedstrom polls the audience that’s live on the conference call.
- The three questions on the poll are 1) how old is your loved one with PWS? 2) how comfortable are you about fundraising for PWS? and 3) how likely is it for you to fundraise for PWS in the next year?
5:34 More on fundraising from Lisa Matesevac:
- COVID has changed how we interact with each other, but she was still able to run her yearly kickball fundraiser tournament.
- She mentions how they stayed focused by coming back to long‑term goals.
- By developing systems, research and development in the PWS world and community can move forward.
- Sharing stories and advocating across multiple platforms are ways to help people understand the complexity of having a child or teenager with PWS.
- Not losing momentum in 2020 was Lisa’s main goal, and she reached that by running the event in a virtual manner, to continue asking for donations in order to support the research.
- By saying thank you to the entire community, it motivates those who haven’t donated to do so if they can whenever they can.
12:40 More on One SMALL Step event fundraising from Sarah Peden:
- The way fundraising has worked for One SMALL Step in 2020 is different from the traditional fundraising model.
- In April, the first virtual walk happened in Thousand Oaks, CA and it was a major success, with people that were able to support from across the country.
- In early June, the Chicago‑area families in Deerfield, IL raised around 90% of what they were aiming for the event.
- In later July, families got together while maintaining social distance and helped raise $33,633 for PWS research.
- The idea of #ChalkYourWalk started in September, to encourage everyone to run, jog, walk, or simply to go outside.
- Walks on Wheels or community car parades have also been common in these fundraising events.
20:13 More on fundraising endurance events from Jackie Mizon:
- Three main types of fundraising events
- Virtual Events have been common, including raffles, cooking shows, and seasonal themes.
- Hybrid Events consist of an in‑person, socially distanced events combined with a reach-out campaign through social media and asking the community to donate and support. Some examples have been golf tournaments, park picnics, and 5Ks.
- A Letter‑Writing Campaign Event can add to your fundraising efforts so that your friends and family know about how you’re doing in these times and feel motivated to help, donate and support your family.
28:36 More on DIY fundraising from Sarah Peden:
- These events have become more common, including "car‑aoking", and doing challenges. From skiing and climbing mountains in Colorado (summiting for PWS) to other types of athletic fundraising such as 5Ks and half‑marathons.
- These events can be very fun and creative, and they can be updated live on Facebook as well.
33:36 More on the 15for15 Challenge from Jackie Mizon:
- This challenge only requires participants to do some physical activity consistently for 15 consecutive days. You can register for 15for15 online, choose your challenge, date and location; make a donation and ask for donations in order to raise awareness for PWS.
36:47 Q&A session with live audience
