Be Your Own Best Advocate

Get Involved with the VHL Family Alliance

-- Camron King, Vice Chairman of the Board and Chairman for California

If you are reading this article then you recognize the importance of the VHL Family Alliance and you know what its like to either live with VHL or care for someone who is dealing with it.  You know that in today’s world, you have to be your own best advocate – each and every person has to take charge and be responsible for maintaining a grasp on their medical condition, their daily lives, their work and families, but can you do more?  Some argue that there is just too much to do as it is, but I would assert that there is more every single one of us can do!  Don’t stop reading here – my assertions are simple and easy to implement – nothing too time consuming and nothing that takes anymore than saying hello (Ok, well maybe a little longer, but only if you choose)!

Get involved in the VHL Family Alliance! We see something like this and immediately our brains say, “I don’t have any more time to give.” Or maybe we do.  Being involved can be simple. I hope the following ideas provide some thoughts for you to get more involved.  You can act on any one or multiple items and in doing so you’ll become a better advocate for yourself and the Alliance!

Educate your neighbors, friends, co-workers, business contacts.  Speaking out and letting people know you have VHL is a very personal decision and its not for everyone, but if you are willing you can put a face and person behind VHL and that in turn creates greater awareness. Talk with people about your experiences, challenges and triumphs with VHL. Each and everyone of us has an amazing story and taking just a few minutes to teach and talk about VHL can make a world of difference. It always strikes me as amazing that VHL is no more rare that muscular dystrophy, but why does MD have such a greater amount of awareness? Maybe its Jerry Lewis, but maybe it’s the fact that people are willing to speak up and act as a spokesperson and advocate for their condition – we can do it too!

Be involved in your community! Community is a very subjective word and can mean many things – neighborhood, city, county, interest group.  I would say, be involved in as many as you feel comfortable.  Simply being around people and working alongside them allows everyone to get to know each other better.  These opportunities are available for people to again get to know the face of VHL, in a positive light.

Take an active role in the Alliance! This is where we all stand to benefit a great deal. Since I was diagnosed I have been astounded at the amazing people I have had the good fortune to meet that are living with VHL.  The caliber of talent and skills that people possess is incredible.  Offer your talents to the betterment of the Alliance.  Get involved in state chapters, start local groups with others in your local communities, offer to provide services, time and energy to the Board of Directors or committees, or make a contribution to help ensure the success of the Alliance. Just simply get involved.  The more we all partner together, the more we are able to leverage our individual talents and skills to help move the Alliance into the future and continue to achieve great successes!

Now is the time to make these things happen. Tomorrow will always be there, but by taking one step forward to getting more involved today will help build a bridge to the future and allow the Alliance to be stronger, VHL to achieve greater recognition and help sustain our research efforts, services and educational programs far into the future! Getting involved in every little way helps you to be a better advocate for yourself, for VHL and for all of us dealing everyday with this condition.

To get more involved, contact the VHL Family Alliance office today at: (800) 767-4VHL or info@vhl.org.  Call MaryLou Linn or Joyce Graff in the office, 1-800-767-4845, ext. 4.

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.