In The News

2b Clinical Study For NF1 Patients with Cutaneous Neurofibromas

Who Can Participate: Ages 18+, Diagnosed with neurofibromatosis type 1, have 10 clinically diagnosed cNF’s, 2 cutaneous neurofibromas on face.

Objective: The purpose of this study is to test the safety and effectiveness of 2 concentrations of NFX-179 gel compared with placebo gel in reducing the appearance of cutaneous neurofibromas (cNFs) in subjects with Neurofibromatosis Type 1 (NF1).

Contact: To see if you qualify for this investigational study, please fill out this form herehttp://patients.nflectionrx.com

A few weeks go the President of NF Mid Atlantic/NF Tumor Foundation called for elections of our Board of Directors. Our current Board has served loyally and longer than their original terms due to COVID. We thank them sincerely. It’s time its time to give them a rest if they want one. Please consider helping us out. Our Board meets by conference call three times a year. Most of the communication is by email. We are just waiting for Covid to let up before beginning new projects, but we are keeping up with our old ones. Board elections are scheduled for the end o October or the beginning of November. If you are interested in being on our Board, please email John.dobson@nftumorfoundation.org

Paul D. Mendelsohn, long time board member and volunteer of this organization under most of its names passed away last month, His memorial service was yesterday on Zoom. It would have  been his birthday. To quote Mary Ann Wilson our founder and first President ” Paul was a great friend to NF.”

Not only did he and his late wife Helen support our local group, they also founded the NF-2 organization.  He was also a founder and first President of what became the NF Network. When Children’s Hospital of Washington, D.C. started Camp New Friends for for kids with NF, Paul was at every camp for years.

He did everything he could to help the NF Community. He was a tireless worker, a good friend, and a patient man.

He will certainly be missed.

November, 2020

Dear Friends,

What a year! Like most other non- profits, NFMA/NFTF had to put most of our plans on hold.

Of course, we are still answering questions and giving out information. We still try and answer

Inquiries within 24 hours. We were able to donate toward Camp New Friends, part of the Brainy

Camps of Children’s Hospital. Washington, D.C. All Brainy Camps, including Camp New Friends were

virtual this year. Nothing has been decided yet about next year.

Some of our members were able to proofread a new book for young adults about a teenage girl

with NF. Another member is scheduled to take part in the NIH adult trials for the new treatment. We

also have members available for mentoring.

All is understandable, donations to NF Mid-Atlantic/NF Tumor Foundation have slowed. But little bit

does help. We appreciate all that, financial and otherwise.

Next year, we hope to get back to normal.

Thank You,

John D. Dobson

Executive Director

www.mskcc.org/cancer-cares/neurofibromatosis/neurofibromatosis-doctors-surgeons-other-specialists

Hi All

The post that I just made wont work unless you have a subscription to the Washington Post. It is a reaaly great article. If you wnt to read it you can look the article up by searching “what will become of Autumn a girl a disfiguring tumor and a clinical trial that offers hop.

www. washingtonpost.com/local/what-will-come-of Autumn-a-girl-a-disfiguring-tumor-and-a-clinical-trial-that-offers-hope-2020/09/18dcdf0d4fa01-11ea-89e3-4b9efa36dc64_story.html

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.

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