When I was in Grand Rapids a few months ago, I met Drew Nelson. I listened to him play, and I think he is terrific! I was able to say hello and speak to him for just a short time. We just became friends on Facebook. He had a show last night and even though I wasn’t there, I asked him to sing one on my favorite songs of his, “Molly’s Home” from his new album, “Dusty Road to Beulah Land.” Here is the message he sent to me after the show,
“Hey Reggie.. I played ‘Molly’s Home’ tonight .. Closed my eyes and pictured you. Hope you are doing well.” – Drew
What a nice guy. When he is in Houston, I for sure will go see him play. He has supported an NF event in Grand Rapids so I’m going to support him with his gift of music. I hope my friends will support him as well!
We wanted to send
a big thankyou from the team!
Pic
attached!
This is the team
below-Tom Lindley on the left, then Tom Peppiatt who you know, Hereward
Pelling our Series Producer , Peter Crystal who you also
know,
Then below
are Caroline Meyer our coordinator and myself the Production Manager Donna!
Toni Niece, of Saltgrass Steak House, gave us permission to shoot some interviews at their restaurant on I-10 @ Campbell Road. Thank you, Toni, the restaurant was perfect, the food excellent and the staff incredible! Our waiter, Chris, was outstanding and took wonderful care of us. Also, thank you for the delicious appetizers! That was completely unnecessary but totally appreciated!
Of mice and men: Mouse models of NF-1 and human clinical trials
Kathryn North M.D., F.R.A.C.P.
Douglas Burrows Professor of Paediatrics
Associate Dean Children’s Hospital at Westmead
Head, Institute for Neuroscience and Muscle Research University of Sydney
Sydney, Australia Monday, June 14th
12:00 noon
Hickey Auditorium
11th floor UT M.D. Anderson Cancer Center Box lunches will be available for the first 50 attendees
Kathryn North is Head of the Institute for Neuroscience and Muscle Research and Associate Dean of the Clinical School, The Children’s Hospital at Westmead. She is also the Douglas Burrows Professor and Head of the Discipline of Pediatrics and Child Health, Faculty of Medicine, University of Sydney. In 2008 was honored by the Human Genetics Society of Australasia for her achievements in genetic research. She is currently a member of the Children’s Hospital Research Executive and Research Committee, and the University of Sydney Medical Deans Advisory Committee. She is Chairman of the Genetics Sub Committee of the Australian Association of Neurologists.
Dr. North is widely acknowledged as a world leader in Neurofibromatosis research.
Anyone who wishes to meet privately with Dr. North during her visit please contact Bartlett Moore (713-794-4066) or Tracey Martin (713-792-6227)
What a great night at the Roller Derby. Please meet my new friends in the photos above. The friends above made the night special f. I don’t remember the little girls name in the photo. She was specially nice, and caring. Seem to be concern about me. I hope she knows that because of her and her Dad and friends I had a terrific night. Thank you for asking about nf, and for taking a photo with me.
Of course it is always fun watching all the roller derby action. All of the teams are good at what they do, Roller Derby, a good place for anyone to go, and get treated as if, you of you are the champs. All the teams treat the fans as if we are playing. Hats off to all of the HRD for treating the so special.
Our friends William Hughes and Matt Jones produced this amazing video to honor Reggie and to help him in his effort to increase awareness of neurofibromatosis. Well done, guys!
Hot, sweaty roller derby action is back at Kicks and Lou and I are going this Saturday! Sure will miss some of the skaters that retired last year but look forward to meeting the new skaters who are taking their place.
I love Houston Roller Derby! The women who skate are tough on the outside but are the sweetest, most wonderful people on the inside. Every time I go, they make me feel like I’m the most important person in the world!
“Follow the lives of three young individuals who fight against a disease that causes tumors to spread through the body.’”
This is Adgiant talking. Just watched the MTV Special Episode, “I Have NF” and I think it is fantastic. They didn’t try to sensationalize the disorder but instead tried to accurately portray, through the lives of three people, how NF has affected them and how they are dealing with it. Very positive. Very uplifting. Very you gotta watch it!
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!
Reggie
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.
best regards
nicky
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When I was in Grand Rapids a few months ago, I met Drew Nelson. I listened to him play, and I think he is terrific! I was able to say hello and speak to him for just a short time. We just became friends on Facebook. He had a show last night and even though I wasn’t there, I asked him to sing one on my favorite songs of his, “Molly’s Home” from his new album, “Dusty Road to Beulah Land.”
Here is the message he sent to me after the show,
More photos right here
