I have to admit SCIENCE was NOT my best subject growing up, and I always thought, “well, I won’t really need it in the future anyway”!! Boy, was I wrong! Here I sit with a daughter with Prader-Willi Syndrome, trying to raise money for its research… and hence, SCIENCE!
Having just attended the Foundation for Prader-Willi Syndrome Research’s Scientific Day in Indianapolis, I must tell you that most of the SCIENCE is STILL over my head! BUT, what I do understand is that without it, Siena would not be where she is today. The researchers and scientists that are funded through FPWR are CHANGING THE FUTURE for those living with Prader-Willi Syndrome. And while I may not have understood every “sciencey” word, I had to hold myself back from running up and hugging each and everyone of the doctors and scientists for dedicating their lives to making a difference in ours. They are truly celebrities to us!
So now, since I am helping to promote the 2nd Annual Philly Live Life Full Gala being held on December 2nd to benefit the Foundation for Prader-Willi Syndrome Research, I thought I might help you all to understand what exactly the gala will help fund! From Endocrinology to Mental Health to Obesity the project categories are diverse to cover all the many challenging symptoms associated with PWS.
The first project I would like to introduce is one I found extremely interesting that was presented by Tony Holland, MD, and involves vagus nerve stimulation to help treat temper outbursts and emotional dysregulation that characteristically affect people with PWS.
Here is the link to read more about Dr. Holland’s project. https://www.fpwr.org/fpwr-funded-projects/proof-of-concept-study-of-vagus-nerve-stimulation-from-an-external-device-in-pws-year-2/
Thank you for reading and hope this will help you get excited about raising money for research!! OH!!! And EARLY BIRD TICKETS ARE NOW AVAILABLE FOR THE GALA!
I am guessing you all know I have a slight obsession for raising awareness about Prader-Willi Syndrome, haha!!!!!
While I am normally found photographing conferences or various fundraisers for The Foundation for Prader Willi Research (FPWR group page), this year I was invited to join the planning committee for the 2nd Annual Live Life Full Gala in Philadelphia on December 2, 2017!!!!! I am so excited to help make this an amazing event and raise money for PWS research!!!!
We are looking for sponsors, silent auction items, as well as gala attendees (HINT, HINT)!!!! Please contact me if you or anyone you know may be interested in becoming involved AND PLEASE HELP ME SPREAD THE WORD!!!! HUGE THANK YOUS to Kate Yingling Schumacher & Trisha Hawthorne for joining the planning committee with me!!!! And of course, this wouldn’t even be possible without two amazing, super-hero PWS moms who pull it all together – Rebecca Wolf McWilliams & Samantha Chipetz!!! xo
Yes, I may be slightly obsessed with raising awareness for PWS, but I am COMPLETELY OBSESSED with finding a way to help our sweet Siena to LIVE LIFE FULL!!
#takethatPWS #cantstopwontstop #sienaeve #LiveLifeFullPhilly2017
May is Prader-Willi Syndrome Awareness Month and I would like to kick off my month of PWS posts with the announcement of the 2nd Annual Live Life Full Gala being held at Punchline in Philadelphia on December 2nd ! I am so excited to be serving on the honorary committee this year!!!! Save the Date and stay tuned for more posts as we honor PWS all month long! Xo
Today is World Rare Disease Day. This day has come to mean a lot to our family since Siena was diagnosed with Prader-Willi Syndrome, but this year it hits even closer to home. In January Siena spent a week at Nemours Children’s Hospital after they discovered an abdominal abscess causing a life threatening infection. Twice she had been sent home from a local hospital with the diagnosis of constipation, and I cannot even stomach to think about what could have been, were it not for our gut instincts, knowledge of PWS and guidance from Siena’s PWS specialist/endocrinologist. We still do not know what caused the abscess, and are left with more questions and more of the unknown.
This entire experience has truly opened my eyes to the importance of advocating for our Rare Disease community. So today I ask you to wear your favorite pair of jeans in support of RARE DISEASE DAY and our girl Siena and if you tell just one person about the meaning of this day, you never know what impact that could have on the future of Rare Disease. #WRDD2017 https://globalgenes.org/