5.19.2014

HD Awareness Month: HD Community

Good morning readers,

I hope every one had a great weekend. It was the first warm weekend here and I really enjoyed it. 

On Sunday morning, I went and had coffee with Seth.  Seth is the President of the MA Chapter of the HDSA, and he is the Co-chair of the National Youth Alliance, at just 23. Seth has been incredibly helpful to my family, right when we needed him. He goes above and beyond his title.

About a month ago, my sister reached out to Seth and explained our situation. She kept telling me how genuine he was, and that he wanted to meet with me. (He coincidentally lives in Natick, MA)

About  a  week ago, I reached out to Seth, and he offered to meet me for coffee. I met with him, and it was so good for me. He is so easy to talk to and just completely understands what I am going through.  He is so positive and believes in a cure.

A few weeks ago, my sister sent me an email saying to fill out the NYA scholarship for the HDSA national convention in June. With Seth's help, Liz and I both completed the scholarship. So there is a good chance that Liz and I will both be going the convention!! I believe that the convention will be so good for me. I need that sense of community. 

Seth has also been helpful to my mom, connecting her with  other care takers.

I am ever grateful for Seth, and all that he has done for me and my family. We appreciate him more than he knows!!

If you could say a prayer, that Liz and I receive a scholarship I would be grateful 
Alex