PURA Syndrome Awareness Campaign

Subscribe to get notified about new events!

Pursuit for PURA

Pursuit for PURA raises awareness and funds for PURA Syndrome, an ultra-rare condition affecting development. We unite the community to support those impacted, advocating for treatments and enhancing quality of life for individuals like Hayden.

Fundraiser for PURA Syndrome + Hayden&#39;s Birthday Edition We invite you to join us on July 4th for a Block Party with Purpose 🇺🇸&nbsp; Join us (or simply donate from afar) at our neighborhood block party celebrating Hayden&#39;s 2nd birthday and helping us fundraise for his rare genetic condition, PURA Syndrome.&nbsp; Attendance is free for all! Enjoy a classic Zenner&#39;s hot dog and a refreshing pFriem beer, non-alcoholic beverages, grab n&#39; go snacks, music, and family fun activities. In honor of our son Hayden Roller who was diagnoses with PURA Syndrome, we are not asking for gifts, but invite you to support by donating to bring awareness and funding for this ultra rare disease on July 4th, Hayden&#39;s actual birthday! Your donation will help fund PURA Syndrome awareness and strengthen our community of family, friends, and neighbors who refuse to let this disability remain invisible in our community. ❤️ Learn more at www.pursuitforpura.org <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1779718220/wysiwyg/g5jmdlra1y0rnfzwnny1.jpg" style="width: 600px; display: block; vertical-align: top; margin: 5px auto; text-align: center; cursor: pointer; padding: 0px 1px; user-select: none; max-width: 100%; position: relative; box-sizing: inherit;" fr-original-style="width: 600px; display: block; vertical-align: top; margin: 5px auto; text-align: center;" fr-original-class="fr-draggable">

Pursuit for PURA

Past events

Past events

Fundraiser for PURA Syndrome + Hayden's Birthday Edition

Powered by