Update on Camp New Friends 2020

Hi All,

Last week we received a letter thanking us for our donation to Camp New Friends – Brainy Camps. With the letter was a letter, which were all held virtually.

Here are some highlights from the letter:

1. Each camper was mailed a box of supplies.

2. Meanwhile the staff of 40 received training in virtual camps.

3. Each camp started at 10:00 am except one that started at 11:30 am. In total the campers were online 5 -5 .5 hours per day with breaks.

4. About 70% of the campers showed up for each session everyday.

This fall there are plans for weekly or bi-weekly support sessions.

If you know any children who would like to be involved, please let Brainy Camps know.

There has been no decision yet if Brainy Camps will be virtual or in person in 2021.

New Children’s NF Clinic

https://www.clevelandjewishnews.com/news/briefs/akron-children-s-hospital-starts-multi-disciplinary-clinic-for-neurofibromatosis/article_1e82230_e6da-11ea-b613-1fdd263fcc36.html

Update on NF Drug

The FDA has only approved the NF-1 drug for children so far. NIH is conducting trials for adults. Further informationwill be posted.

Corona Virus

Folks with NF are at no greater risk for either getting COVID-19 or becoming severely ill as a result of it than anyone else.  NF in and of itself is not a risk factor.  That said, some folks with NF also have other underlying health problems that could put them at greater risk or cause their experience of illness to be different.   At this time, COVID-19 provides a risk to all of us and it is important to follow the CDC guidelines for social distancing, handwashing, avoiding sick contacts and self care.

Corona Virus

The Corona Virus (COVID-19} has changed all our lives. At the current time we know of no more risks specific to the NF Community than the general population. Please take the precautions you feel are necessary. Remember to was hands frequently and practice social distancing (at least three feet from others). We will still answer all inquiries within 24 hours, if possible. We’ll let you know if we hear an more information on NF and Corona virus. Stay safe!

40th Anniversary

In honor of our 40th Anniversary, our organization has made a donations to Camp New Friends and Johns Hopkins.