Volunteers Making a Difference

Altheada Johnson of New York chairs the Hotline Committee, coordinating the scheduling and training of all the hotline volunteers. She is also the lady who answers info@vhl.org, and reads and replies to messages sent to Contact Us on our website.

Donations come in two major forms: money and time. It takes both to sustain an organization like this one. Altogether more than 90 volunteers donated more than 10,000 hours to this effort. Each and every donation was important.

We would like to recognize publicly here the very special efforts of a few of these people.

She helps to design our outreach to the medically underserved in the United States. One key activity is the redesign of our telephone access path, making it easier for people to get through to the Hotline in English and in Spanish.

Since 1993 she has chaired the New York State Chapter. In addition to these on-going activities, this year she organized and chaired the Annual Meeting in Queens, New York.

Altheada has served nine years on the Board of Directors, and is beginning her fourth term, more elected terms than anyone else on the Board. She serves as Secretary of the Board, on the Executive Committee.

Another of the Hotline volunteers is Robin Kadlecek of Texas. Robin was chosen this year as our Volunteer of the Year for her outstanding service and thorough, caring replies both on the Hotline and in the Online Discussion Group. Robin has learned about VHL “the hard way” through the experiences of her husband and two sons, for whom she is the family coordinator of appointments and care.

Altheada, Robin, and Audrey Clifton of North Carolina have staffed the hotline very ably this past year. Anyone interested in becoming a member of the Hotline Committee is asked to contact Altheada at 800-767-4845 ext.3.

The leaders of our Chapters are also essential personnel in this network of volunteers. They provide an very important link for people at the local level, welcoming new members, and assisting them in finding services within the state. There are jobs of many sizes to fit people’s busy schedules.

Gale Lugo of Florida has been a very active Chairman of the Florida Chapter since 1994. She tries to contact people in Florida once a year, reminding them that she is there, and helping people find good care for VHL in Florida. She holds a meeting in Florida every 1-2 years.

Since last fall she has helped as Acting Chair for the Southeast Region, and has assisted in recruiting and training new chapter leaders in South Carolina and Montana. She is working on creating a regional meeting in the Alabama area.

Gale has served since 1999 as one of the moderators of the English language Online Discussion group, vhl.clinicahealth.com, making sure people get the information and support they need.

Fran Mott of Michigan is another of our most active chapter chairs. Fran stays in touch with members in Michigan, providing comfort, helping people find medical help when their doctors get stuck, and delving deeply into some of the more tricky medical issues we face.

She is in close touch with the Clinical Care Center at the University of Michigan, and with other hospitals in the Detroit area, offering her assistance to doctors for their patients with VHL, and also in making contact with VHL experts when the doctors themselves face a tricky situation.

We salute these very special people.
Won’t you join the team? Whatever time or money you can contribute will be very much appreciated, and will go to raise hope and improve quality of life for all people affected by VHL.
Thank you!