In a recent message to our membership, Theresa Strong wrote about the alarmingly low level of funding being allotted to the National Institutes of Health. An official of NIH was quoted as saying that the knowledge to cure many diseases already exists, but because research funding is not available, this work cannot be done.

Honestly, reading this makes me sick. Advocating for government leaders to develop fiscal priorities that focus on our highest needs is no longer an option. Yes, we are a research organization, but we cannot avoid being involved in advocacy because accessing the level of funding provided by the NIH is our goal. Our grants have been unbelievable successful in uncovering new avenues for research, but our grants are just the beginning. Once our researchers have data from the work we have funded, they can take that to the NIH to argue for the larger grants that will allow them to study PWS issues in a big way. We can develop the seeds, but we need a garden to plant them in. That's where the NIH comes in. Hearing that other choices have taken priority over NIH funding to this extent should literally raise the hair on our heads and cause us to take action. Yes, there are a myriad of demands for the government's attention and funding, but very few of them more important than curing disease. To think that we have the knowledge and the ability to cure diseases, including PWS, and we're not doing it, is something we should not stand for.


We are in a highly political season (just in case any of you have missed it!) and there's no time like the present to make our concerns heard. There are lots of options for involvement. Here are three ways you can advocate for your child:

  • As you know, we are making plans now for our conference in DC in September and this will be an excellent opportunity for all of us to make our voices heard on this issue.
  • As you make your decisions regarding the coming president and other elected officials who will be in charge of allocations, research their various positions and make your decisions carefully. Talk this up among friends and family so that they understand what is involved and why you feel like you do so when it comes time for them to vote, they may well factor this issue into their decisions.
  • Take the time to contact your local leaders and make sure they know how you feel about this issue. Representing you and your concerns is their job. You have a right to be heard!


Friends, as much as we wish things were different, and as much as life requires of us already making this so unfair, we have to do everything we can to advocate for our children's health and futures. Some of us will do this in big ways, and some of us in small ways. The end result is that–together- -we have the strength to make our combined voices heard. Plan to do your part. Take the lead! Change their future!



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