Minnesota Chapter Report

I have recently taken over the job of chairman of the Minnesota Chapter from Sarah Simpson. Minnesota has a great “core group” of about 10 families that keep in contact and get together. There are a few more that I keep in contact with, but they are not close to the Minneapolis area, so they are not available to get together for meetings.

For many years the chapter has held an annual BBQ in the early fall. I hope to have a get-together this summer. I want to meet everyone.

Members share the names of providers they have used with success. I have been busy working on Minnesota provider lists and working with Mayo Clinic to educate people about VHL. Mayo Clinic is creating a website for their VHL clinic, and I am hoping to link to the VHLFA website on it.

I am looking into some ideas for fundraising. Last year the Minnesota chapter helped to fund Dr. Bratslavsky’s attendance at a kidney cancer conference in Moscow, teaching doctors in Russia about VHL.

I have been in contact with numerous doctors, nurses, medical professionals about VHL and VHL Family Alliance. I have asked them if it is okay for me to place them on a Minnesota providers list. There are also a lot of doctors, nurses and medical professionals in the Minnesota database. Because we have Mayo Clinic in our backyard, there is a lot of professional medical participation. We are lucky to have Mayo Clinic in our state.

I like the idea of doing both nationwide and regional meetings. I appreciate the quarterly teleconferences for chapter leaders. I would be interested in knowing what chapter chairs in the Midwest are doing. I am close to South Dakota, Wisconsin and Iowa and would love to be in touch with their chapter chairs. The online discussion group for members has also been wonderful.

I look forward to working more with the wonderful group in Minnesota, and with our colleagues in other nearby States. I hope to meet other chapter leaders in Houston in June!

As printed in the VHL Family Forum 19:2, April/May 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.