Another Great Birthday!

Alex A.

In March of 2000, when our son Alex was four years old, a large endolymphatic sac tumor invaded his brain and right ear. It was determined to be VHL, an anomaly for the doctors because they had never dealt with VHL in such a young child. No pediatric surgeon in New Jersey had ever removed that kind of VHL tumor. A neurologist experienced in adult VHL operated together with a pediatric neurosurgeon. After 14 hours of surgery, we heard those magic words, "clean margins". But the price was large. If someone in your family has VHL, you know what I mean.

You know what VHL can do to a patient and his family. Alex is profoundly deaf in his right ear, missing one carotid artery, with partial facial paralysis, compromised balance (inner and middle ear also removed). He has to have MRIs and other tests on a regular basis. We all had to be tested as VHL carriers, including our now seven-year-old daughter Amy. Every childhood illness and injury has to be examined and treated with extra caution and care. We try not to think about what we almost lost, and what we all might have to face in the future.

On the bright side, Alex celebrated his ninth birthday in June, he's fairly comfortable with his hearing aids, he plays Little League, basketball, swims, is an excellent student and seems to be growing up like any normal, happy, healthy boy. We all take a vitamin supplement to help us manage stress and keep our energy up.

All our immediate family's DNA tests for VHL were negative. Alex is the first in our family ever to have VHL. That makes us feel even more strongly that VHL research is critical, as are the funds to support it.

So I am determined to raise funds for The VHL Family Alliance in any way possible. They do important work that not only will help my family and yours, but could affect anyone we know - a neighbor, a teacher, a clergyman or mail carrier. We are very much aware that the number of new families with VHL is growing. So this is where I choose to put my focus. And I'm writing to urge you to do the same.

We all can do our part, not only to raise funds, but to bring VHL awareness to each of our communities. Everyone has heard of Muscular Dystrophy, but how many know that the number of VHL cases closely rivals those of MD? How many of your friends and neighbors have even heard of VHL? The money is important, but the name is, too. When you are considering fund-raising, remember that Name Recognition is half the battle.

Don't have the time, you say? I work full-time running two businesses and as a substitute teacher. With two children under ten years old, a house, a husband and a dog, free time does not come easily to me. But I've found that fundraising can be easy, and not time consuming. I want to share with you some successful fundraising efforts I've undertaken. If each of us tries just one of these ideas for The VHL Alliance, together we can accomplish a lot!

My very first fundraising endeavor was with The Pampered Chef Organization, www.pamperedchef.com. I hosted a party in my home for VHL and raised nearly $500. It was a lot of fun and a great way to meet new people and get the word out on VHL.

In my school, every other Friday throughout the school year, the teachers "dress down" and wear casual clothes. To earn that privilege they give about $80 each to charity for the year. Last year my co-workers split their donations between VHL and another worthy charity. This was a wonderful way to inform the community about VHL and get them involved.

Here is a list of some other ideas you can put into action in your community:

Sell VHL wristbands like the ones you've seen for Lance Armstrong's LiveStrong campaign and for other charities. Children love to do this, and are never too young to learn about the importance of charitable giving.

Network in your school, neighborhood and community to find local business sponsors who will support a VHL Walk-A-Thon or Read-A-Thon.

Ask a local nursery to sell you flowers at a reduced price, then resell them for fundraising profit at your school, church or synagogue, local swim club, Little League games, supermarkets - you can think of lots of other places. Lemonade Stands work well in those places too.

Bake Sales and Car Washes are always a fundraising hit.

Or auction something off on eBay and donate all or part of the proceeds to VHL. There also is a list of ideas on the VHL website at www.vhl.org/help

Feel free to e-mail me for support and for more ideas on your fundraising endeavors at my New Jersey address, us-nj@vhl.org. I look forward to hearing from you. For Alex, for all VHL families and those who care about them and for everyone potentially at risk - Let's get this party started!

As printed in the VHL Family Forum 13:2, August/September 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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