PWS Awareness Month- Day 27

Hi Everyone,

After Kemett was born and we received his diagnosis, we knew we wanted to find a way to make a difference.  With my background, I also hoped I could fundraise and make a difference.  Eventually, we found Foundation for Prader-Willi Research.  They have a fundraising platform, One Small Step, for families.  We will have a post about this later in the week.

Andrew and I needed to find other families that had hope for the future and felt the same way we do.  FPWR has provided this for us!  We have met amazing families through them.  We attended their annual conference this past November in Long Island, and cannot wait to host this years conference in Austin, TX!

The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives. Today, FPWR is composed of hundreds of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders, and autism spectrum disorders.

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.

To date FPWR has raised over $4.5 million for research.  Every year they have been able to raise more than the last year.  All of this means that more research and clinical trials can be funded!  The more money put towards this, the faster answers and treatments will happen.

People have asked if there is anything to stop the hunger.  At the moment there are no medications that Kemett could take to relieve this symptom.  But everyday, we are getting closer and closer.

Click Here to learn more about clinical trials and research.  I won’t go into details on here because it is complicated and a lot of it goes over my head.

You can also follow FPWR on Facebook.  Here you will get great updates as new research comes out!  I will also do a better job this next year to share exciting news!

I just know that we are getting close, and we will not stop fighting!

Thank you for following our journey and for asking questions!  Only a few more days left, so stick with us!

Love,

The Demands

 

 

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