NF2 webinar with Scott Plotkin, MD

NF Network is pleased to present an NF2 Webinar on November 30th, 2011. You don’t want to miss this webinar with guest presenter, and NF2 expert Dr. Scott Plotkin, MD, PhD. Just a couple of the topics Dr. Plotkin will discuss are advancements in NF2 research and the genetic inheritance of NF2.


image Dr. Plotkin is the director of the Neurofibromatosis Clinic within the department of Neurology at Massachusetts General Hospital. He has been director since 2005, and is also a member of the Mass General Brain Tumor Center. Having trained as both an oncologist and neurologist, he was initially exposed to NF because it is a tumor syndrome that affects the nervous system. In 2003 the passion of the NF patient advocacy network inspired him to devote his career to combating this disease. He is active in educating medical professionals inside and outside of Mass General about NF, and NF Network is excited to have him present this fully captioned NF2 Webinar.

November 30, 2011

5:00 p.m. Pacific Time
7:00 p.m. Central Time
8:00 p.m. Eastern Time

Reggie is to be honored at the Houston Roller Derby this Saturday and presented with a check to aid in promoting awareness of neurofibromatosis. This is the third or fourth year that HRD has done this for the Just Ask Foundation and I can’t begin to tell you what a difference it has made for the success of the foundation and the life of Reggie Bibbs!

Houston Roller Derby freaking ROCKS!!!!

If you ever want to meet the nicest, craziest, loving, kind-hearted, amazingly talented yet somewhat strange, in a good way, people on the face of the earth, go to a Houston Roller Derby match. You will walk away with a new respect for the sport and the women and men who make it happen! We’ve been fans for at least 5 years and it keeps getting better and better!

How can you not love teams with names like the Psych Ward Sirens, Bayou City Bosses, The Brawlers and Machete Betties!

And skaters with such loving, sweet and feminine names like:

Pysch Ward Sirens: Brand-Aid, Candy Codeine, Carmen Geddit, Copperhead, Hot Rod Bettie, Jekyll and Heidi, Kitty Cocktail, Kym KarSmashUin, Lisa Lava, Marianne Morgue, Maulin’ Angel, Mistilla the Killa, Sick Nick, Singapore Rogue, SyRenge, The Angie-Christ and Wicked Sweet.

Bayou City Bosses: Bat Brat, Becky Booty, Bettie WatchIt, Beverly Kills, Big Bad Voodoo Dollie, Blindside, Bloody Hell, Bombadee, Cynder Hellyeah, Goldie Bloxx, Grrl Friday, Kiki Mojo, Little Hurtmaid, Lipstick Assassin, Mary Queen of Skates, Norma Leigh Sane, Rachael Rayge, Rebel Ann, Shaw Shank and Shocker Zulu.

The Brawlers: 2xForce, Bombs Away May , BlueJ , Dutch Destroyer , Flyon Maiden, Leather & Mace, Louisa May Assault, Princess Prozac, Radium DK, Grande Locolicious, Sexy Sniper. Sweetie Todd, Tempestua, The Prosecutor  and Windigo.

Referees: Ajax, Corbin Cojones, Chris, Mikey Hates It, The Prosecutor, Madam M


These are our newest, bestest friends in the world!
Lou and I were in Soho and when it was time to get back to the hotel, we realized we forgot the name of the hotel and had NO idea of the address. Luckily there was a Starbucks around the corner and the staff couldn’t have been nicer or more helpful.
Kamilla, the manager,  suggested we use her phone to call the only contact number we had to the production company who promptly emailed the address to us of our hotel, we showed it to the cab driver and we were back to the hotel in 15 minutes!
But here’s the best part, in the midst of this frenzy to get back to the hotel, Kamilla asked us if we would like a coffee or tea on the house!
They were busy as hell but took the time to help two dumb Americans and I think that was a wonderful thing to do. We had gone to three previous coffee houses and stores looking for a phone directory so we could possibly figure out which street it was because there was a Starbucks across the street from the hotel but none of these places either had a directory or refused to help.
Starbucks, you just made a best friend for life! Thank you Kamilla, Wlad (sp?) and Laszlo!
Howard Shultz, I sure hope you are listening, or reading, in this case!
Facebook link with comments:

Cindy Gonzalez Hahn, you rock!!!!

What a blast Camp for All was this past weekend!!! Kudos to Cindy Hahn and the entire staff and Board of Directors of Texas NF for hosting such an important and extremely necessary event to help bring NF’ers and their families together to share in an atmosphere of fun, education and fellowship.

For 20 years, the Texas NF Foundation has been putting on these camps for the benefit of all who are challenged by neurofibromatosis and I think it would be wonderful for everyone who has benefited from these camps to express their thanks to all involved!

I’m sure an email to Cindy Hahn at The Texas NF Foundation would be very much appreciated!

See photos at:


Dear NF friends,

For the past several years researchers have suspected that there is a higher risk for breast cancer in individuals with NF1.  This research has now come to Michigan.  Dr. Xia Wang at Henry Ford Hospital is working on a grant from the Department of Defence to study breast cancer in NF1.

If you or a family member with NF1 has had breast cancer, regardless of how long ago, please consider contacting Dr. Wang to help her gather data.  Simply email her at  She’ll send you all the information you need to decide whether you wish to participate.

You may also contact Dr. Wang by phone:

Xia Wang MD, PhD, FACMG
Department of Medical Genetics
Henry Ford Health System
3031 W. Grand Blvd., Ste. 700
Detroit, MI 48202

Tel    (313) 916-3188
Fax   (313) 916-1730

Warm regards,


Rosemary Anderson
NF, Inc. Michigan
NF Support Group of West Michigan

Over the past three years, there have been at least 119,486 visitors from at least 173 countries to!!!
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If you’d like to order your very own, “official” JUST ASK! t-shirt, you’re in the right place!! T-shirts are available in kids small, kids medium, kids large, adult small, medium, large, X-large, 2X-large and 3X-large. Cost is just $15 plus shipping and handling per shirt with all proceeds going toward increasing awareness of neurofibromatosis.

Colors available:

Women: Pink, Blue, Plum, Purple.

Girls: Pink, Blue, Plum.

Men: Dark Gray, Gold

Boys: Light Gray, Gold

“Race the Lake for NF Research 10K”

Saturday, August 6 · 9:00am – 12:00pm

Pillar Point, New York, 23169 Kitto Marina Drive, Pillar Point, NY

Please join us for the 10th annual Race the Lake for Research 10K to fight neurofibromatosis! The race begins and ends at our family marina: Kitto’s marina in beautiful Pillar Point (just outside of Dexter, NY).

The 10K is a nice loop that finishes along the lake. Afterward, relax and enjoy the marina festivities: a pancake breakfast (made to order!), swimming, and relishing in the fact that you made a difference + had a great time-all before NOON!!!!
For more information you can e-mail me
info: 315-639-6043, Diantha Kitto Velasquez.

For more info, click here!

As promised, I intend to pay tribute to each and everyone who sends me a photo of themselves or someone else they know, wearing one of my Just Ask T-Shirts.

I see by these outward expressions that people really do care about those with NF and spreading the word, they care first by purchasing one of my shirts and by wearing the shirt in public, and lastly by taking the time to have their picture taken. Here is what I desire; send me a picture of you or someone else wearing one of my shirts. I think this is going to be a lot of fun, lets see just how public everyone can be, the more people around, the better exposure NF will have, (a little raise in shirt sales won’t hurt ether.)

Some of you may not have received your orders as yet, but I’m sure you will receive it soon. I personally fold and prepare each shirt for shipment, and try to stay caught up as best as is possible. The photos will be posted, as they are received. Old pictures are ok too, it is never too late, even if your shirt is faded it’s ok. I’m looking forward to receiving yours soon. If you only have hard copy pictures, that’s ok, I’ll find someone to scan them and I’ll return the originals if requested. Please no inappropriate photos, G-Rated only please, Also please include your name properly spelled as you desire or maybe written on the back of the hard copies. Thank you! Reggie

Introducing the new. redesigned “Just Ask!” t-shirt in charcoal gray. Just in time for fun, summer swear! Perfect for the beach, boating, mountain climbing, bowling, you name it! Available in medium, large, XL, XXL and XXXL. To purchase your very own new. redesigned “Just Ask!” t-shirt in charcoal gray, click here!