HD Heroes Book Release
So it hasn’t been all bad news. We were asked to reach out to people to endorse our Huntington’s Disease Heroes book, so I reached out to...
So it hasn’t been all bad news. We were asked to reach out to people to endorse our Huntington’s Disease Heroes book, so I reached out to...
Two weeks ago, I had my first clinical appointment for Huntington’s Disease at Johns Hopkins HD Center. I had been there for testing and...
I think we had about 200 people, and we raised $30,000!!! Oh, what a night! I have zero pics on my phone, but I know I was in SO many....
I couldn’t be more excited to announce this fundraising event at the gorgeous Boordy Vineyards! Please join us Thursday, Nov. 10th for...
Why do I want to tell my story? I want to raise awareness, and I think we have to come out of the shadows to do it. My grandmother and...
Last weekend, my Aunt Nancy performed a benefit concert for HD in Baldwinsville, NY. She helped raise $7,000 for the Johns Hopkins HD...
Well, we crushed our goal because all of you are amazing! We actually hit $19,000 (a few people sent money to Rachel after)!!! I can’t...
So, first of all, yes our family really does have an Annual Pie Eating Contest the night of Thanksgiving each year. This happens after...
The first Ride for Huntington’s was a blast! We had a great turnout and raised $15,000 for the Johns Hopkins HD Center!!! So grateful to...
Since May is Huntington's Disease Awareness month, my general outlook is to have as much fun as I can before I'm too sick to do stuff....
Here is a link to the second interview Kim and I did with Johns Hopkins Medicine after raising $29,000 for an fMRI pilot study to...
I can't believe we did it!!! We raised $29,000 to start the Pryce Pilot Study at Johns Hopkins Huntington's Disease Center. This study...
I was asked to join the advisory board for the Hopkins Huntington’s Disease Center! And my big sister Kim was asked to be the chair. In...
Here is a link to the interview that Kim and I did with Johns Hopkins Medicine about our family story, which led to us speaking at the...
What's more terrifying than being tested for Huntington's Disease? Speaking about it in public. My sister Kim and I shared our family...
I’m now 4 years into knowing my positive Huntington’s Disease status (#LetsTalkAboutHD). I’m 3 years into fundraising for the HDSA, and...
On the last day of Huntington’s Disease Awareness Month, I want to share a story about finding out about HD, but I don’t really remember...
If you ever wonder if your donations make any difference, I can assure you that this one will. On June 2nd, I will be walking to raise...
The HDSA tells me that May is Huntington's Disease Awareness month. I had no idea this was a thing, but they don't have an ice bucket...
I participated in my first Huntington's Disease research trial yesterday and today at Johns Hopkins. I am happy to report that they got...