Outgoing President’s Message


Passion Image


Many years ago a friend once asked me what I was passionate about. At the time I didn’t feel like I had a really good answer. Sure, there were things I liked and activities I enjoyed but nothing that I truly thought I felt passionate about. Today, however, if you ask me what I’m passionate about I will, with great emotion and conviction, tell you that I am passionate about helping other PWS families. I will tell you that I am passionate about raising awareness for Prader-Willi syndrome. I will talk your ear off about the benefits of early intervention and growth hormone therapy. I will answer your questions and find resources to help you. I will, with tears in my eyes, tell you how incredibly grateful I am to the founders of PWCF so that when Ryan was born almost 12 years ago I had a place to reach out to and get much-needed support. I will proudly tell you how PWCF is the only organization in California that exclusively serves families with PWS, and that the work we do is crucial. I will speak enthusiastically about how PWCF helps families who have just been diagnosed, trains schools so students with PWS get the supports they need, provides training to residential and vocational providers, advocates for  continued Regional Center eligibility and appropriate medical care, runs a PWS camp session (with a second location staring in 2016), and so much more!

So my last day of Board service, after terming out after 9 years, finds me reflecting on my years of service and how my passion has grown. I began my Board service in January 2007 when my son (Ryan) was not quite 3 years old. Ryan was diagnosed when he less than two weeks old and we reached out to both PWSA and PWCF right away, so before becoming a Board Member I was already familiar with the wonderful work PWCF does. However, it really was serving on the Board that sparked my passion for the cause, which has continued to grow over the years. I have learned so much through my time on the Board and, even 9 years later, am still continually impressed with the amazing work we do with limited resources and the outstanding commitment of my fellow Board Members with whom I have had the honoring of serving with through the years as well as our fabulous PWCF staff and consultants. I have met many wonderful members, spoken to the public, presented to medical students, and collaborated with PWSA’s Board and staff as well as other chapter leaders. I am proud of the work that PWCF does and of the growth that has been accomplished by the Board during my tenure. It has been an amazing journey and though my time as a Board member is ending (for now), the passion for PWCF’s work will never end. I am whole-heartedly committed to the organization; I will continue to serve on several committees and will be at the Board’s disposal for whatever they need.

As I bid farewell to you and wish you a Happy New Year, I encourage you to make a commitment for 2016 to get more involved. “More” may be as a simple as sharing more of PWCF’s Facebook posts (which helps spread awareness), it may be coming to more events (last year you came to the Walk, this year you commit to coming to the Walk and the Annual Conference),  it may be doing a fundraiser or just fundraising for our Walk, it may be talking to your friends and family about the important work PWCF does; everyone’s circumstances are different, so find a “more” that fits your ability and make that commitment. PWCF is your organization and I promise that whatever the more is that you commit to, you will not regret it. As this year’s Shining Star campaign says…

Picture a world where everyone understands Prader-Willi syndrome, where everyone touched by PWS receives the education, supports and services they need.

Help us make this is reality. Make 2016 the year you find your passion too.

Thank you for allowing me the privilege of serving you and thereby finding my passion in life.

Happy New Year,

Julie Casey

Outgoing PWCF Board President