I’m baaack!!! You didn’t think I was going to let us just rest on our laurels after we raised almost $900 in honor of my birthday last year? No way, no how! This year I’m upping the ante!
 

As you’ll no doubt recall (or won’t recall) last year I asked you, my lovely friends and family, to make a $27 donation to the National Marfan Foundation for my 27th birthday.

So, after hours of brainstorming, countless flow charts, venn diagrams and excel spreadsheets, I was finally able to come up with the appropriate follow-up to last year. Are you on the edge of your seat yet?
 

To mark this, my birthday month (yes, I get a month!), I am asking for donations of $28 for my 28th birthday! Innovative, I know! As with last year, if $28 isn’t the right number for you, you could give $56 (the number of ways the Red Sox broke my heart this year) or $14 (the number of hairs I had on my head back in July after I shaved my head thanks to a great fundraising effort by others in the Marfan community...see picture). Or another amount that is meaningful to you, to me or to your accountant.
 

Whatever you decide, you can rest assured that the money will be used exactly as it should. To help people like me who are living with Marfan Syndrome or Related Disorders get the care we need to live our lives to the fullest. Your money will be used to encourage and support ground-breaking research to help us learn more about these conditions. Your money will be used to make a difference.
 

Living with Marfan Syndrome hasn’t been easy. Over the past 28 years I have been faced with a variety of challenges and had to overcome some significant obstacles. Quite simply, I would not be the person I am today without the support and guidance of the incredible folks at the NMF and you, my friends and family. I can think of no greater way to celebrate my birthday, than to have us all come together to help secure the future of this vital organization.  

Thank you so much for your support and feel free to sing Happy Birthday to me at any time 

From the NMF website:
Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeleton, eyes, heart and blood vessels. It is estimated that more than 200,000 people in the U.S. are affected by Marfan syndrome or a related connective tissue disorder. Marfan syndrome is often hereditary, but approximately 25-30% of affected people are the first in their family to have the disorder. Thousands do not even know that they are affected.
 

There is no cure for Marfan syndrome, but with an early diagnosis, proper treatment and careful management of the disorder, it is possible for people to live a normal life-span.