Thank you for your interest in helping raise awareness for NF. With your help, I hope to spread the word about neurofibromatosis through web, viral, web-related resources, and personal appearances at events throughout the country
Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.
I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine. Read more »
Today Lou and I went out to the Houston Roller Derby Crawfish Boil to help support the HRD. We had a great time supporting our friends. They have been really supportive to Neurofibromatosis, I want to help support them for everything they are doing for us. And because they are so wonderful!
I also met a lot of new friends as well. Everyone I met tonight had the oppertunity to JUST ASK about NF, which is hard to do when at the derby. This was a great way to spread awareness of NF. Great friends and a very super time. Enjoy the photos we have posted. Leave comments on the blog and photos as well.
See you at the Roller Derby!
Just talked with Reggie and he had a phenomenal time at the book signing event last night thanks to Greg Gorman. Reggie said he met a lot of great people and took a lot of photos. He’s going to try to email me one or two to put on the site until he gets back. PHOTOS
In any event, if you were at the party on Wednesday, please leave a comment so we can live vicariously through Reggie’s amazing life!
Top photo: Me and photographer,
Middle: Me, Christopher Atkins (Blue Lagoon) and Scott Dickson
Lower: Me and Audrey Wells (Director: Under the Tuscan Sun).
Tonight was the first game for the Houston Roller Derby. season.
It was a great night , and tough bouts in every match.
I have season tickets and, plan to be at every game to support all of my favorite teams as they have supported me. All of the teams really know how to show love to there fans. I always feel welcome at the games, and never felt more welcome anywhere else. Don’t take my word, Just check out the photos.
It was great seeing old friends again and making new ones.
Dementia, Mistilla, Carmen Geddit and Heidi will always hold a special place in my heart!
To all of the new friends tonight, I appreciate your kind words and I hope to talk to you again.
Maybe next time, we can talk about you!
Thank you. PHOTOS HERE!
As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).
It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Read more »
Saturday night was the 47th Annual Houston ADDY awards. It was the night of the stars. The American Advertising Federation honored Lou’s former boss, Don Brown, of Taylor Brown & Barnhill, while Only In Houston honored Steve Farrell, of Radio Music Theater, who is also one of the funniest guys I have ever seen. I met him after the ADDYs when Lou and I went to the theatre to present him with his award. Steve is a great man and I was proud to meet him and his family.
STANANDLOU and I won two gold ADDYs, one silver ADDY, and a Special Judges Award for Public Service Advertising for our new “Just Ask! ads! . That was a total surprise to me. I’m thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about nf as we keep pushing forward. Thank you all for supporting the site with your visits.
At left are new friends I met last night, Tony and Jenny.
The other couple I have known for years, Carmen and James.
My new friends just came over and sat next to Lou and me. Never bringing up the subject of what happened to me. Lots of times it is no longer a subject. Lou and I brought up the fact that I have Neurofibromatosis. They were so understanding and kind.
I feel great that I no longer stay home in fear of what someone will say to me. It I felt that way, I would have missed out on meeting the great people I have met last night and in the last few years. My life has finally begun. I didn’t give people a chance before. This is why I started Just Ask, to encourage others that have NF to live life to the fullest. I’m doing it and I encourage them as well. We can support one another in everything we do.
A story on the township resident will air on CNN HLN Saturday through Monday.
AUSTINTOWN — Ed Port writes poetry, loves animals and enjoys cooking, but all some people see is his disease.
Neurofibromatosis type 2 causes severe tumors. For Port, 38, the tumors cover the left side of his face, obscuring his facial features and limiting vision in his left eye.
The Vindicator first wrote about Port and his condition in November. He’s since been in touch with plastic surgeons and other doctors and has received donations from a few people. Port has a Web site http://www.edneedsamiracle.com, but he is working to establish a nonprofit corporation to accept donations.
This weekend an interview with Port will air on CNN HLN, formerly Headline News. CNN conducted the interview last month.
A network representative said the show, “News To Me,” will air at 7:30 and 9:30 p.m. Saturday and Sunday and at 12:30 and 5:30 a.m. Sunday and Monday.
“You shoot it, we show it,” the network’s Web site says of the program. “‘News To Me’ is the world as seen through YOUR cameras.”
Vindicator chief photographer Bob Yosay shot the video of a CNN HLN reporter’s interview with Port.
Port hopes to raise awareness about the disease through the publicity. Read more »
Thank you for the e-mail MIke forward it to me. How did yo hear about my story? I fist saw you on the O about a year ago when I was flipping thou the TV chs Mike has been trying to help me get my story out. I ws chatting with friend today on yahoo that lives in Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.
I would like your imput on anything that would help make the website better. I wike your store very much it would great to speak to you
Youngstown Ohio Read more »
We are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.
The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.
In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.
To the many new friends that I met at the Texas Renaissance Festival on Friday I’d just like to say, thank you for making it one of the most fun days in my life.
There are so many new people that I’ve met that I don’t remember your names but you can definitely see your photo below. Special thanks to Taarna the Ice Queen Faerie for the beautiful handmade pin that I’ll treasure forever, Queen Bonnie and her Realm for making me a Knight (Don’t worry, I will smash the wicked peeps at every opportunity!).
Thank you Arsene Dupin – Juggler, Magician, Comedian, Mime Extraordinaire, Louis and Matt – The Fabulous Other Brothers, Blair the Beer Mistress, The Kissing Lady that was so sweet, the guy from the Houston Roller Derby with the beard and kilt, my special friends from Goodwill, the English couple in black leather that I had my picture taken with last year and this year, and finally to all the hundreds and hundreds of people at the Texas Renaissance Festival who make me feel like a King.
Thank you all and I’ll see you next year! MORE PHOTOS HERE!
It’s good to be home, but sad to leave the company of my great new friends. Thank you all for your kindness.
I received to day your tee shirt. I’m very very prud to wear it! I only do it for great events for neurofibromatosis! As you can see It fit me very well. Very sooner I’ll publish in my blog a text about my purchasse. Dis you see my slide shot about the naughty little toad? In this clip I wear a French neurofibromatose tee shirt size M because the French association own S tee shirt no more. I hope the sending was not too expensive for you. Kind regards my friend
If you would like to email Francis, his address is firstname.lastname@example.org
We have just ordered a new batch of “JUST ASK!” t-shirts! They will be shipped next week and will be available for immediate sale.
The new shirts are 100% cotton, Hanes Beefy Ts, available in 3x,2x, XL, L, M & S. Mustard yellow with distressed dark blue lettering.
$15 All proceeds benefit the Just Ask! Foundation.
Reggie, Lou, William and Geo went to one of my favorite places in the world, the Texas Renaissance Festival.
I met a lot of great people like Lisa, Christina, Lewis, Barbara “The Fairy Lady” and saw a lot of old friends including the “Pretzel Guy” and the belly dancers from the International Festival.
The weather was perfect, the entertainment very good, and I had the BEST DARN steak on a stick I’ve ever had!
Now if there was some way we could go without Lou having to tag along!!!
Donate the easy way! Go to igive.com, connect to your favorite online sites, buy stuff and they’ll donate 2% to NF!
I have been made aware recently of this great site that contributes money to your favorite cause every time you go their site to buy your favorite brands online. If you currently buy music on iTunes, books from Amazon, videos from Netflix, office supplies from Staples,or one of a million things, you might want to look into this! It’s a great, easy way to raise money for neurofibromatosis research, and it doesn’t cost anyone a dime! Please take a look if you could.
More Supporters Mean More Donations for Neurofibromatosis .
Send an invitation and tell your friends about this free, easy way to support your cause! The $50,000 Surfathon Sweepstakes makes now an even better time for friends to join, since every visit to an iGive store means another chance for your cause to win a prize this month! (Click here for rules.)
We’ll also donate an extra $5 to your friend’s favorite charity when they make their first purchase within 45 days of joining. Send them your personalized referral link and Neurofibromatosis will be pre-selected to benefit! Those $5 donations can really add up – so start inviting!
Here’s your personalized iGive referral link. You can use this link in your e-mail signature line, on your Facebook or MySpace page, or on your personal website/blog to recruit new supporters. Be sure to copy/paste the entire link:
The votes are in! Our initial order of tshirts will be the small Just Ask! design on the front and Reggie’s face on the back with the url over his head. (SEE GREEN SHIRTS IN UPPER LEFT.) Our initial order will be pink/white and mustard yellow/blue. We will order in a variety of sizes. If we can order a lot of different colors we will although it might turn into a nightmare trying to keep everything in stock!
If you are interested in ordering a shirt or shirts, please let us know now if possible so we havce an idea of how many to order. I’ve already taken the liberty of putting Emily down for a dozen pink and a dozen yellow. In any event, if you could give us an idea of what or how many you’d like, that would be great! Just leave a comment below or email Reggie at email@example.com.
Thanks everyone! Oh, the shirts will be $15 and all cotton so they will breathe nicely!
Jake Tapper is ABC News’ Senior National Correspondent based in the network’s Washington bureau. He writes about politics and popular culture and covers a range of national stories.
October 07, 2008 12:33 PM
Do you remember last year when Sen. Barack Obama, D-Ill., donated a doodle for an auction to benefit Neurofibromatosis, Inc. and epilepsy research? The doodle, of some of his Senate colleagues, sold for more than $2,000 on eBay.
New Republic senior editor Noam Scheiber went up to Alaska to profile the governor and during a visit with Palin’s former colleague on the city council, Laura Chase, found this document — the back of a Wasilla city budget which Palin doodled on in 1996 as she plotted her mayoral campaign.
She makes notes on slogans: “You would be my boss! No tax increase! … Wasilla needs a conservative choice in leadership.”
She makes notes on her resume: “Life Long Alaskan; Graduate: Wasilla High School, Univ. of Idaho (Bach. In Journalism, minor Politics); Wife, mother of three, Homeowners, Businesswoman, TAXPAYER!;…NRA supporter,” “taxpayer!”
There’s a close-up scan of the document HERE.
** Read more »
We are thinking of redesigning the shirts so they are simpler, more fun, and are equally appealing to men and women.
We have two styles we’re looking at – distressed and/or solid colors. We’re also investigating different colors for the shirts.
Which design do you like? What colors would you prefer?
Let us know below and who knows, you just might see the shirt of your dreams up here in a few days!
Reggie and his trusty sidekick, Shiner!
Just got Shiner. Meet my new dog. Shiner is a great dog and I’m thankful to my new friends Connie and Jaen Lawrence. They helped me with making a great home for my dog. We went to the Pampered Pet Inn. When I saw Shiner he came over to me and laid down. He was just the dog I wanted. He’s right next to me as I write. He will be watching TVLAND tonight.
Lets talk pets. What kind do you have. What kind do you want?
Last night’s Houston Roller Derby championship bout between the Psych Ward Sirens and the Bayou City Bosses was one for the ages! I thought the Sirens just might pull it out in the end but with 45 seconds left in the bout, two Sirens were in the penalty box allowing Death by Chocolate to run out the clock.
Both teams rocked last night! Although the Sirens may not of won, they certainly came out as winners. I’ve never seen more heart and passion in a sport than what I saw last night. I think Mistilla the Killa gave Holla-Pain-Yo a complex last night! Every time I looked up, Mistilla was introducing Holla-Pain-Yo to the floor. And Carmen Geddit was steady as a rock!!! All night long. Never giving up. Incredible performance! Jekyll & Heidi had an incredible jam in the first half helping to keep the score close. Congratulations to the Bosses! Both teams played their hearts out.
I was looking at your blog – I didn’t realise that you were affected by Hurricane Ike! I’m glad that you are OK! You definitely have more interesting weather in Texas than we have in England!
The roller-derby looked very cool! That’s when everybody wears roller-skates, right?
I will ask a friend to take a photograph of me wearing my Just Ask shirt tomorrow!
The NF Camp For All looks totally cool! What types of activities did you do at the camp?
I am still trying to think of the best thing that I could draw for a t-shirt design for your auction or foundation. As you suggested, I could do one-off art for the auction, but I do my art on a computer, so it would have to be a high-quality print-out. Maybe we could print a few and say they are “limited edition prints”?
I have been reading about NF research on the web to get some ideas about a design.
You are a big hero, my friend – you help so many people in such a big way.
Remember that I mentioned that I have OCD (Obsessive-Compulsive Disorder)? Well, I am going to give a talk to some medical students tomorrow about it, to try to help more people understand about it.
Have a great day!
Your English friend, Rick.
See all the photos from PJ’s Pork Night and the aftermath party at Lou’s.
Last night was GREAT! I met new friends that made a point to talk to me. It was the top of the night for me. I’m not good with names but thank you for talking to me. I hope to see you again. Email me and when I’m back on line I will reply. Both photos from last night look terrific!
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology