Infor About Camp New Friends

Hi All,

Beginning in, Brainy Camps will collaborate with Melwood a 501-c3 not-for-profit organization dedicated to serving our community and fully aligned with our mission to help youth with chronic health conditions live well and reach their potential. We are calling this new collaboration Camp Accomplish

Annual Appeal

The NF Tumor Foundation

1543 Dellsway Rd Towson, MD 21286

(T) 443.253.5383 (U) www.nftumorfoundation.org November, 2023

Dear Friends,

Finally, we are out in public again. Our organization took part in two events this past summer. We plan to do more next year.

Of course, we are still answering inquiries, providing NF information, taking part in NF studies, and donating to Camp New Friends. Our members have met with several hospitals again this year.

While we are not as large or as active as we once were, we keep up to date and endeavor to answer all inquiries within 24 hours. We provide NF information to those who have not been able to find it elsewhere.

One of our members just met the mother of an NF-affected girl. They didn’t even know there was an NF organization. If anyone is ever able to provide NF information this way, please do so.

Donations of time, money, and support are greatly appreciated. We sincerely thank all those who have donated.

Thank You,

John D. Dobson

Executive Director

Congratulations to Dr. Jashiri Blakeley, Johns Hopkins Neurology- Neurofibromatosis on being named one of Baltimore Magazine’s Top Doctors.

Research Study Available

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

Need New Board Members

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 Mendelsohn

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.

Annual Appeal

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

Update On Below Post

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.

Great Article. A Must Read

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