Siena Eve’s LIVE LIFE FULL Campaign

https://onesmallstep.fpwr.org/dw/users/sienaeve/VirtualFundraiser

We know many of our friends and family cannot attend the Philadelphia Live Life Full Gala in December and have asked if there are other ways they could contribute, so we decided to set up this fundraising page like we did last year. Your donation is tax deductible and 100% of it will go to the Foundation for Prader-Willi Research.
2017 started out a bit rocky for Siena, as she spent a week in the hospital because of an abdominal abscess, which to this today we are still not sure what caused it. What we do know is that without the research and knowledge that has been achieved by our team of PWS experts, Siena would not be the healthy little girl she is today. They guided the doctors at the hospital through the many medical difficulties associated with PWS and together we chose the best approach to treat the abscess. Siena’s team of experts is largely funded by the Foundation for Prader-Willi Syndome, and because of this, we have pledged our unwavering support to FPWR. Our mission of hope is that one day Siena, and all of her friends with Prader-Willi Syndrome, will live an independent life, free of the burdens that are associated with PWS, so that they may LIVE LIFE FULL.
As always, we are forever grateful to all of you for being our village. Without your love and support our light of hope would be very dim. xo
With Love,
Andy, Jamie, Isla, Siena & Lucca

 

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RESEARCH, RESEARCH, RESEARCH!

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!

https://www.fpwr.org/events/2017-live-life-full-gala-philadelphia/

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2nd ANNUAL LIVE LIFE FULL PHILLY

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

Save The Date

That’s a Wrap #PWSAWARENESSMONTH

Today is the last day of Prader-Willi Awareness Month, thank you for following our journey.
We had a very rough beginning to our 2017 and know first-hand how important it is to educate our community about rare diseases. In January, when Siena suffered extreme abdominal pain, we went to our local Emergency Room and were sent home TWICE with them telling us it was just constipation. Two characteristics of PWS – high pain threshold and slow digestive system had masked a life-threatening abscess that was causing a major infection in Siena’s body. Thankfully….VERY THANKFULLY… we ended up at a hospital that was knowledgeable about Prader-Willi Syndrome and took the steps needed to find the abscess. Siena was put on IV antibiotics and had to fast for 6 days while she remained hospitalized, and continued antibiotics for 2 weeks after being sent home.
We are still doing testing and trying to figure out what caused the abscess and it could turn out it has nothing at all to do with Prader-Willi Syndrome. BUT, the fact remains that we could have lost our sweet, sweet girl because our local ER did not have the knowledge about PWS, nor did they listen when I tried to explain to them about her high pain threshold. Instead, we were sent home and told to double up on the mirilax and give her an enema.
KNOWLEDGE and AWARENESS is what SAVED our daughter’s life. Scary, however, that we had to drive almost 2 hours to find it. The reason we tell our story is not for anyone to ever feel sorry for us or for Siena, but to spread AWARENESS and KNOWLEDGE about Prader-Willi Syndrome…. so that hopefully the next time she needs emergency medical attention, we can get the care needed right away…. so that someday, our words will find the ears and mind of someone who will find a CURE.
“If I can’t find the cure, I’ll
I’ll fix you with my love
No matter what you know, I’ll
I’ll fix you with my love
And if you say you’re okay
I’m gonna heal you anyway
Promise I’ll always be there
Promise I’ll be the cure”
#cantstop #wontstop #PWSAWARENESSMONTH #PraderWilliSyndrome #SienaEve

PWS Awareness Month Kick-Off

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! XoIMG_8681

World Rare Disease Day 2017

16711979_10154591715589051_7500975312260275522_nToday 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/

Road to Recovery

Siena is making a speedy recovery after her third bilateral myringotomy (ear tube surgery) yesterday and told me last night her ears feel better. It was quite amazing to me how different our experience was yesterday compared to 2011 when Siena was first diagnosed. I remember just 5 years ago feeling that even the staff at Nemours knew very little about Prader-Willi Syndrome. But yesterday was not like that at all – I didn’t feel like I was speaking a different language. Even the cardiologist in Hershey seemed knowledgeable about PWS.

ALL OF THIS TO SAY THANK YOU. Thank you to each of you who have told someone else about Prader-Willi Syndrome and have helped us spread awareness. Thank you to each of you who year after year attended Siena’s PWS Walks. And thank you to everyone who recently donated to Siena’s Foundation for Prader-Willi Research fundraising page, which raised almost $4000! In just a little over 60 days the PWS community raised $1,388,000 – all of which was MATCHED by Leon and Irina Shaulov (parents of a son with PWS)! These are the reasons we feel more confident every day that Siena will be able to accomplish anything her sweet little heart desires!

We work hard as a family to keep Siena safe and strong, but if it were not for all of you, I am certain we would not be where we are today. So sending a HUGE hug to EVERYONE and wishing you and yours a healthy and happy 2017! MUCH LOVE & GRATITUDE TO YOU ALL ! xoxo

One last thing: If you are still looking to donate to FPWR, inspired by the Shaulov’s generous matching gift, the Grandparents of a child with PWS have pledged to match donations through the end of the year (up to $50,000)! Here is Siena’s page link!
http://onesmallstep.fpwr.org/…/use…/sienaeve/virtualwalk2016image