DNA Reimbursement Program Extended

The VHL Family Alliance (VHLFA) has extended the tissue donation program for another six months, through June 30, 2009. If you file a copy of your DNA mutation report with the VHL Tissue Bank at NDRI, the VHLFA will reimburse you $100 toward the cost of DNA testing. You do not need to be a member of the VHL Family Alliance to donate tissue.

This tissue is being gathered to help promote research on VHL. Numbers count -- the more tissue is available, the more interest in VHL is likely. Here is our chance to be proactive.

The VHL mutation will no longer be passed in my family, at least the family I am in touch with. The only ones left with VHL are myself and my aunt who is 71 years old. Even though I don’t have any biological children, nor expect to have any, I plan on donating any and all tissue, both during my lifetime and after I die. After all, I will no longer need them.  And I try to recycle whenever I can.

If you register with NDRI (US & Canadian residents only), there are a number of papers to fill out. Davlyn Tang at 800-222-6374 x 242, has been extremely helpful with all my questions in filling out the paperwork. I’m also available to go over the forms with you since I have done it already. I have all the papers filled out in my possession since I faxed Davlyn the forms. If I can be of help, send me an email us-fl@vhl.org.

You just have to call Davlyn in the Rare Disease Program and tell her you would like to register for the VHL program. She will send you all the necessary information. 

Once you are registered, the actual tissue donation is easy -- just give NDRI the name of the surgeon and the date and place of the surgery.

I am passionate about this program because I really think this is the break we really need to help find answers and to spread the word about VHL.

Won’t you consider a valuable donation that can help our future generations?

As printed in the VHL Family Forum 17:1, January/February 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.