Saturday, August 23, 2014

Viral Challenges...

I hate Prader-Willi syndrome. I hate everything that it does to Ellie, and the stress it causes our family. It interferes with our holidays, with going out, with every meal time. It means I can’t sleep if we don’t have a nurse, and that needles and pills will be top of mind in our household until I’m old and grey. I think about it when I wake up, and I think of it while I try, and fail, to fall asleep.

PWS is everywhere in my life.
I have been thinking, a lot, about what we can do to change things, and it really is all in the research. My cookie sales are decent, and it’s creatively rewarding for me to be able to do something I love, while contributing to research at the same time. Of course, it’s getting harder and harder to maintain order in my kitchen, with Ellie’s increasing demands around food.

Our walk this year was a success. But, despite having raised almost $29,000, I feel like the wind has been taken out of my sails.

It takes everything I have to ask friends to donate, to spread the word that PWS needs funding. We’ve been fortunate, and are very, very grateful, to have many people support us, but more choose to do nothing. At the end of every walk, I’m left feeling completely drained. The research into PWS treatments is far-reaching, and would have a huge impact on the general population. Did you know that more than 1.4 BILLION people in the world are overweight*? If a cure could be found for the Hunger of PWS, the treatments could undoubtedly be passed on to the rest of the world, reducing all the secondary diseases caused by obesity.
There’s a craze sweeping the internet: The ALS Ice Bucket Challenge. To date, the challenge has resulted in donations of over $62.5 MILLION dollars. My Facebook newsfeed shows little other than videos of everyone dumping ice buckets on their heads. I’m flabbergasted at how many people are participating. Don’t get me wrong, ALS is a horrendous disease. It is one association I have supported through cookie and cash donations. Our family tries to support as many research foundations as possible, especially for the diseases that affect our friends and family. We don’t have a lot, but everything we can, we give.

ALS affects only 1-2 in 100,000 people. PWS affects 1:15,000.
ALS funding in the last month is at $62.5 million. PWS funding for the whole of 2014 is $789,000.

I will never forget being told that for every $100 we raise for PWS research, we are 1 hour closer to a cure. $62.5 million translates to 70 years closer to a cure.
Are all these people donating just because it’s the cool thing to do? I don’t understand the trend for viral activities. I think it’s great people are acting, I just wish the payout were spread out so that all rare diseases stood to benefit.

It makes me sad that I don’t have a “cool” idea that everyone wants to spread around, to help me  fix the stupid syndrome that rules our household. And, I
 wish more people would give so generously without a showy gimmick like the bucket challenge.