Peeper Pyper's Party

In honor of our daughter Pyper, we are hosting the first annual Peeper Pyper’s Party on February 27 to raise funds for the Familial Dysautonomia Foundation.

Pyper was born with a rare, disabling, genetic disorder called Familial Dysautonomia (FD). FD affects the autonomic and sensory nervous systems, which controls voluntary and involuntary bodily functions, such as blood pressure regulation, temperature control ,breathing, swallowing, muscle control, kidney function, production of tears, awareness of pain, and much more.

Pyper is the 712th person in the WORLD that has ever been diagnosed with this condition. Currently, there are only 135 patients living with this disease in the United States, and there is no treatment or cure.

The prognosis of this disease has historically been very grim. In 1990, a child born with FD had a 50% chance of living to the age of 5; however, the phenomenal teams at the NYU Dysautonomia Center and Familial Dysautonomia Foundation are changing these statistics. 

In honor of our daughter Pyper, we are hosting the first annual Peeper Pyper’s Party on February 27 to raise funds for the Familial Dysautonomia Foundation.

For more than 50 years, the doctors and researchers have worked to make major medical advancements for the patients who suffer from this disease, ensuring those affected by FD receive the care they need while continuing to research for a potential cure.

Life with FD is filled with daily challenges, and many normal body functions we take for granted are challenging for Pyper. Eating, drinking, crying, walking, running, climbing the stairs, and coughing are all things Pyper has had to work extra hard to be able to do. She begins each day with 45 minutes of respiratory therapies, numerous medications, and “drinking” water through her G-tube, and she ends each day the same way. Pyper also goes to sleep every night connected to a biPap. This daily routine, combined with her weekly Physical Therapy, Occupational Therapy, Feeding Therapy, and Speech Therapy continue to keep Pyper healthy and advancing, and amazingly, she does all of these things with a smile on her face (most of the time!).

At almost 7 years old, Pyper is not only living, but she is thriving! Thanks to the many advances in medical care, children born with FD today have a 50% chance of living to 40, but our goal is to shatter this expectation and give children with FD a 100% chance of living a full life with minimal complications from FD.

Join us Sunday February 27, 2022, we are hosting a fundraiser at the Jewish Heritage Center in Phoenix to help the FD Foundation continue their research to find a cure, and we are asking for your support.  There are many ways to get involved with this event – through sponsoring the event, donating auction items, participating  in our scavenger hunt, or making a contribution.

Thank you in advance for your generosity and support! We hope to see you there!

Sincerely,

Stephanie and Brian Stillman

(Zoey and Pyper too!)