Adults Living with NF

Post date: Jan 12, 2016 5:37:13 PM

ADULTS WITH NF

The Children’s Tumor Foundation is dedicated to providing support and resources for individuals with NF of all ages. In efforts to expand our adult focused programs, last fall we distributed a survey addressing interest in adult support opportunities. Thank you to all that participated!

Below are some of the highlights of the survey results:

• Individuals who responded to the survey ranged from ages 18 to 70 with a majority between 36 and 50 years of age.
• Most individuals who responded have a diagnosis of NF1, but there were respondents with both NF2 and schwannomatosis represented.
• Sixty percent of individuals responding indicated that they do not have opportunities to connect with other adults with NF.
• The most attended NF events that respondents reported attending were a local NF Walk or local medical symposium.
• A vast majority of adults with NF say that they are likely or very likely to participate in a group meet at a local NF walk event, an adult online chat/internet support group or other social media and a breakout session at the NF Family Forum.

The results of the survey were helpful to develop the following ideas to promote support for adults with NF:

JOIN US for an ADULT MEET-UP in Austin, TX at the NF Forum: patient and family symposium on June 17-19, 2016. This will be a great way to connect with other adults. Look for the welcome area specifically for adults with NF to discuss adult resources and connect with other adults during the Forum.

PLAN AN EVENT in your area! If you know of an upcoming walk or event, contact the organizer to see if you can assist in an adult meet-up during or following the event. Or, plan your own adult event – be creative – casual drinks, dinner, picnic, etc.! CTF can assist you in marketing your event. Contact the regional representative for your area.

PARTICIPATE in an ADULTS WITH NF WORK GROUP to discuss additional ways to support each other and bring the ideas to your own state. If you are interested in participating or have other ideas, please contact Sheila Drevyanko at adultswithnf@gmail.com or (515)277-8494. Thank you to Sheila for her passion and dedication in leading this cause!

The Children’s Tumor Foundation is also exploring other ideas and will keep you posted as they come to fruition. We want every member of our NF family to feel valued and appreciated and know that this is a step towards a brighter future!