05/29/2026
Please consider making a $15 donation to this amazing organization that is working to build resources and supports for PWS Families.
Do it for Dashel. We are!
https://www.zeffy.com/en-US/donation-form/15-for-15-challange
🧡 Meet the Prader-Willi Alliance of Pennsylvania — and why your support matters more than you know.
If you're part of the PWS community in Pennsylvania — or anywhere, really — we want you to know who we are, what we're building, and why the work we're doing together matters for every single family navigating life with Prader-Willi Syndrome.
🏠 Who We Are
The Prader-Willi Alliance of Pennsylvania (PWAofPA) is a newly established organization — launched in 2026 — built by and for the PWS community in Pennsylvania. We are caregivers, advocates, parents, professionals, and friends — united by a shared commitment to making sure no PWS family in Pennsylvania walks this road alone.
We are new. We are growing. And we are already showing up for this community with everything we have. But to build what this community deserves, we need your help. 🧡
🎯 Where We Are Headed — Our Vision for Pennsylvania Families
We didn't start this organization to think small. Here is what we are working toward building for every PWS family in Pennsylvania:
🤝 Family Support & Resources — Connecting Pennsylvania families with the resources, referrals, and guidance they need — from newly diagnosed families who don't know where to start, to experienced caregivers navigating adult transitions, housing, legal planning, and beyond. We are already building our Pennsylvania Resource Database to make this a reality.📚 Education & Awareness — Working to educate families, medical providers, educators, legislators, and the broader community about what PWS really looks like — because better awareness leads to better care, better support, and better outcomes.🏛️ Legislative Advocacy — Bringing the voices of PWS families to the table where decisions are being made — at the state level, in the medical community, and beyond. Your story matters, and we intend to make sure it is heard.
🔬 Clinical Trial Information — We believe that an informed family is an empowered family. Our goal is to ensure that every Pennsylvania family living with PWS has access to clear, honest information about clinical trials — what they are, what participation actually involves, and how to navigate the process. Volunteering for a trial is no small thing — it takes time, commitment, and courage. We will never take that lightly, and we will always make sure families have what they need to make the right decision for their loved one.
🌐 Community Building — We believe that connection is medicine. Bringing Pennsylvania families together — sharing what works, what doesn't, and what keeps us going — is at the heart of everything we are building.
🌟 Why Your Support Matters Right Now — The $15 for 15 Challenge
None of this vision becomes reality without resources, and every single dollar raised goes directly back into building the support, advocacy, and community that Pennsylvania PWS families deserve.
That's why we have launched the $15 for 15 Challenge for PWS Awareness Month.
$15 feels small. The impact is anything but.
Here is what your donation helps make possible:
✅ Providing a pathway to research and family conferences — so Pennsylvania families have a seat at the table where the future of PWS is being shaped
✅ Educating and supporting families navigating clinical trial decisions — honestly and without pressure
✅ Building and maintaining a Pennsylvania resource database for legal, medical, and community support
✅ Supporting newly diagnosed families who need guidance and a community immediately
✅ Educating medical providers, educators, and legislators about the realities of PWS
✅ Creating community events that bring our support and relationships off the screen and in person — giving individuals with PWS, their siblings, and their families the chance to form real, meaningful connections with people who truly get it
✅ Making sure no Pennsylvania family ever feels alone in this
🧡 From our families to yours — thank you.
We know what it takes to show up for someone with PWS every single day. We see you, we're here for you, and we are building something for you.
👉 Donate to the $15 for 15 Challenge today:
🔗 https://www.zeffy.com/en-US/donation-form/15-for-15-challange
📩 Questions? Reach out: [email protected]
PWAofPA is a newly established 501(c)(3) organization. Every dollar donated goes directly toward building resources and support for Pennsylvania PWS families.
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