A friend of mine, Chad Leathers sports his Just Ask! shirt in Antarctica for a race4 research. nf. Chad and I have been friends for abut a year. He has a great story. If you enjoy good music and concerts follow the link. Tumorators. Chad has projects going on to help fight for
a cure for nf. Please visit his page to learn more as to how you can attend one of his concerts. I know I plan to make a surprise visit. But don’t tell Chad. I want it to surprise him. Thank you Chad for spreading awareness by wearing my just ask shirt.
About The Tumornators
The Tumornators is a fundraising team started by the Leathers/Cone family in conjunction with the Children’s Tumor Foundation that is dedicated to raising money and awareness to end. Neurofibromatosis (NF) and Schwannomatosis through research.
On Christmas Eve 2006 while driving back to Georgia from one of Drew’s many surgeries at Johns Hopkins Hospital, the family decided to take a more active role in Drew’s illness. The foundation was born February 2007 when they put together a compelling slideshow telling Drew’s story that, accompanied by a heartfelt song written by Drew’s brother, Ben, appeared on the newly-formed web site.
Thanks to the generosity of people like you, the grassroots campaign has raised over $100,000 to date through fundraisers, donations and with the help of friends like Atlanta Braves right fielder Jeff Francoeur and former NFL player Matt Stinchcomb and New Orleans Saint, Jon Stinchcomb.
All funds raised are donated directly to the Children’s Tumor Foundation so that Drew and others like him can live a life free of the devastating impact of tumors.
Join me in Vancouver, Canada on April 9 and 10 at “A Day in the Life of NF1”. BCNF and NF Canada have invited expert presenters from France, Belgium, the United Kingdom, the US and across Canada to share the latest information about research, treatments and management of symptoms. Speakers include geneticists, bone experts, dermatologists and more. Clinical geneticist and cell biologist Dr. Vincent M. Riccardi has been working on NF since 1972! There are also presentations on how to tell if new treatments are the real deal; alternative health care options; and about getting more out of life – including my talk about my “Just Ask” campaign.
NF Canada, in partnership with the BCNF, is excited to announce its upcoming medical symposium scheduled for April 2010 in Vancouver, BC. This event will bring important researchers and clinicians from Canada, the US and Australia together with those living with NF, for two days of learning and networking. It is going to be the NF event of the year and you won’t want to miss it!
We are pleased to offer limited travel funds to assist families with defraying the costs of attending the A Day in the Life of NF1 symposium. Please complete the Request for Travel Stipend Form to apply for funds.
We would like to thank our sponsors for their generous support of this event:
I just got this email from the UK and I just wanted to share. It brought tears to my eyes and made me realize just how lucky I am!
Hey Reggie… all the way from the UK! I asked Caroline at Darlows for your email and she said you had okay-ed my writing to you. I work freelance doing transcriptions for various production companies, and for Darlows especially for the past 15 or so years [yes, I’m very old!] and have listened to an enormously diverse spectrum of people, as you can imagine, from politicians, air crash survivors, children who have had terrible things to suffer in their young lives already, victims of tornadoes and floods and yes, it does get a little depressing sometimes that they don’t tend to focus on more joyous subject matters, though I did do one recently for them on the history of Concorde which was neat. And interviewees do come along whose stories are very moving and which touch the heart more than others.
BUT… having the immense privilege of seeing you and listening to you as I transcribed interviews from the DVDs and also your wonderful mom and the fabulous Shiner [though sadly he didn’t say much!], has been one of the stand-out highlights of my career. I have felt so involved in your whole story, and could certainly relate to parts of it, like your not wanting to go out into the world early on, and then gradually being drawn out by your lovely friend who has helped and encouraged you to go forward with Just Ask and a whole host of other “out there” type things, like going to meet Maurice. I was sad for you about not being a baker, I’ll bet you’d have been brilliant, and food is always so much nicer when made with love.
Your journal will make amazing reading as you have the most extraordinary way with words, and as a diarist myself I know the value of keeping that sort of record of thoughts, feelings and achievements.
Anyway, I’m sad that my work on the programme has now ended and I’m onto the next one, but I do hope you will think they’ve made a good programme when you finally see it all put together, and I know for a fact that it will touch everyone who sees it as it has done me. “Reggie rocks” is what the girl who works with me said, and we both agree!
I wish you continuing strength to battle whatever life may throw at you, and the continuing love and support of your friends and family will go a long way to providing that. And Shiner, of course, the most important friend and companion of all.
Thought things couldn’t get any better. I found out yesterday things can always get better, Even though you are happy with the way things are going for you now. I Meet a lot of nice people in Austin. Our Austin friends are learning about neurofibromatosis and showing compassion about all who are affected by NF. Shouldn’t surprise me. I always walk away feeling great, as I know the new friends I met feel the same. A big thank you to all who took time to take photos with me! You are all very special to me!
Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.
Michelle Hickman, you made my day today! Thank you so very much!
Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!
A few months back, you may remember the blog asking for your vote so that I could be one of the speakers at SXSW. Well, your vote worked because I will be one of the speakers this weekend. Lou and I head out to Austin Saturday to check in and scope out the place. Then, on Sunday around noon, I will share with the panel how I utilized the internet via my website, blog, and Flickr, YouTube and other resources on the internet to spread awareness of neurofibromatosis. It would be great to see you there. All the information you need, if you would like to attend, is here. Look forward to seeing you. If you live in Austin, definitely send me a message!
By the way, I did NOT write the title of the panel!
My name is Patty Hall and I’m a research director recruiting people with NF1 for a double blind, placebo based study investigating certain nutrients in the treatment of symptoms of NF1. Attached is a copy of the protocol for your consideration as a post. I need sixty patients and the study is of no cost to participants.
Neuropathy Solutions is currently seeking 60 patients with Neurofibromatosis 1 to participate in a double blind, placebo-based study investigating the use of nutrients in the treatment of symptoms related to NF1. Study participants should be:
1. Ages 13 and older.
2. Have a diagnosis of NF 1 based on NIH criteria with two of more of the following characteristics.
a. Six or more café-au-lait macules
b. Skin fold freckling of the axilla and groin
c. Optic pathway glimoa
d. Two of more Lisch Nodules of the iris
e. Distinctive bony lesions such as dysplasia of the sphenoid wing or the long bone of the tibia.
f. Two or more neurofibromas of any type or one or more plexiform neurofibroma
g. First degree relative with NF1
3. At least four subcutaneous neurofibromas on skin exam with the following qualities; the lesion must be discrete by clinical exam and amenable to measurement with calipers with a minimum dimension of 5mm and a maximum of 20 mm.
Patients will be supplied all study supplement and receive follow up consultations for a period of six months free of charge. If interested, please call Patty Hall at (616) 826-4033 or email her at firstname.lastname@example.org.
Patty Hall, Research Director, Neuropathy Solutions
I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK. Sugar Ray wrote me. He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries. This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the JUST ASK! campaign. Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!