Monthly Archives: April 2010

London To Paris bike ride


London To Paris bike ride

April 28, 2010

I am cycling from London to Paris in Septmber will try and update on my progess and fundraising . Please look at my just giving page for more information.


Im Skydiving for HD on 05/23/10 on what would be my dads 52nd bday


Im Skydiving for HD on 05/23/10 on what would be my dads 52nd bday

April 27, 2010

I’m skydiving to raise money and awareness for Huntington’s Disease. It’s a rare degenerative disease that I have and has no cure! My dad was diagnosed with HD in 1991. I lost my father at age 48 to HD on February 7th, 2007 . My mom took care of him everyday for 16 years. At the end he was 65lbs, was under hospice care and had a to eat through a feeding tube. It was what would happen if you combined MS, Parkinson’s Disease, Cancer and AIDS all in one painfully cruel disease.

I also have HD along with 2 other siblings. This is a hereditary disease so our children have a 50/50 chance of getting HD. My siblings and I are already experiencing symptoms. I am not dead yet and do not plan on living as so. I’m trying to be a good role model to my children. I want them to know that you don’t have to be rich to make a difference in the world. I believe that their voice is their most powerful instrument when used in a positive and proactive manner.

How much of what I’ve raised goes directly to the charity? The more money raised, the higher the percentage of funds the HDSA OC Chapter receives. Based on the amount of $500, approximately 50% of your fund raising will go to the charity. When I raise $1000, about 70% going to the charity, and close to 90% for $5000 raised.

Therefore, I’m jumping out of a perfectly good airplane for a cause while I can. I am doing it for everyone that has HD, takes care of someone with HD, knows someone with HD or has lost someone to HD, I am doing this for you. Its the least I can do. With your help we wont have to wonder………..”What if”. What is I had donated? Did I do my part to help? Even donating a penny is one step in the right direction.

My Website Link for my HDSA Orange County Skydiving Fundraiser:

Have a wonderful day!

Eternally Grateful, Desirae

Dreamng for a Cure


Do n’t  ,lose your mind.. Have it targeted, on one object. That is on, the cure. Never, lose sight of it..  Never, turn away, from your side.  Never, lose the cure in your mind. We will,  get cured and day come soon.  The generations, will stop. No more,  little HD kids..  They, can live, HD free days.  We can all be HD,   free when we get cured. We can taste it, we are that close. Do stop dreaming about it. It will, come to life. Never,  lose your hope.

Caffeine and hd


> There was a significant correlation between
> > higher caffeine intake and earlier age of onset (p=3D0.016) for HD.
> Which could mean too much caffeine can trigger HD earlier?=20
> Or could mean those who develop HD early take the caffeine (unknowingly) =
> to combat the symptoms of HD (like fatigue, etc.)?
>I ride Inga, and get exhausted.