Mistilla and Carmen Geddit were awesome last night! They were the last two jams of the night with the Psych Ward Sirens down by 10 or so points. What they did in the last two minutes of the match reminded me what Eli Manning did in the last two minutes of the Super Bowl a couple of years ago. They brought their team back with poise, concentration, talent and heart!!! What a finish!!!!
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 »
We just received terrific news from the Internal Revenue Service. The IRS has determined that the Just Ask Foundation is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue code!!!
This is extremely important to the future of the Just Ask! Foundation because now contributions to the Just Ask! Foundation are deductible under section 170 of the code. We are also qualified to receive tax deductible bequests and gifts. We don’t have to rely on t-shirt sales to keep the website going or to fund our speaking engagements.
This is what we have been working on since last year. Thank goodness: mission complete. This wouldn’t have been possible without the tireless efforts of William Hughes, a friend of mine and Lou’s, who also happens to be on the board of the Just Ask! Foundation. William was the point person on dealing wtih the IRS and all the government agencies involved to get this special designation.
Also, none of this would have been possible without the generous support of Michelle Reed of STANANDLOU Advertising who donated the fees necessary to apply for the 501c3 status. Thank you so much, Michelle!
Thanks to William and Michelle, we will be able to raise money through donations, grants, foundations, fund-raising events, etc. and pay no taxes. Everything goes to fund the Just Ask!foundation! Great news for all involved!
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!
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!
In Phoenix , Arizona , a 26-year-old mother stared down at her 6 year old son, who was dying of terminal leukemia.
Although her heart was filled with sadness, she also had a strong feeling of determination. Like any parent, she wanted her son to grow up & fulfill all his dreams. Now that was no longer possible..
The leukemia would see to that. But she still wanted her son’s dream to come true. She took her son’ s hand and asked, ‘Billy, did you ever think about what you wanted to be once you grew up? Did you ever dream and wish what you would do with your life?
“Mommy, I always wanted to be a fireman when I grew up.’
Mom smiled back and said, ‘Let’s see if we can
make your wish come true.’ Read more »
I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!
Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily, Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.
Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed, told us that she would sign the petition to fund research for neurofibromatosis.
Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee! – Reggie
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.
The Texas Neurofibromatosis Foundation is sending a few of us to Washington DC, to speak to our Senators about Neurofibromatosis, in hopes of getting more support and funding for NF research. We leave Houston This Sunday, Feb 8th, return Wednesday, the 11th. When Susan Johnson, president of the Texas NF Foundation asked me to go with them, I was more then happy to be a part of this great opportunity to meet the Senators and show them how important it is that we have their support in the fight against this disorder. I know this trip will make a difference. Wish us luck!
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 »
Thursday was another great Steak Night at PJ’S Sports Bar followed by a JAM session at Lou’s place. First, after a long absence from PJ’s, we made our first visit of the year. It was great seeing John, Matt, Geo, Everett, William, PJ and a new friend, Brieton.
After enjoying our great steaks, we went to Lou’s studio…I mean house, where we played our favorite songs, Ball and Chain, Do Lord, and I’m On Fire. We may have the video up loaded soon. Also we have pictures of us playing. View the photos and watch for the video. Thank you Everett for some of the photos you took for us. MORE PHOTOS HERE
My friend Francis was nice enough to send me a t-shirt all the way from France. I’m proudly wearing the NF FRANCE t-shirt. Francis also is a bloger here and he has is own blog page as well. He wrote about me in two of his blogs. We recently spoke on the phone and he, like all of us here, is spreading the word about nf and hope there will be a cure some day. There is always hope. The link to the site on the shirt is anrfrance.org If you would you can visit Francis blog. droitaladifference.blogspot.com/
You can use google translate if you don’t know French. It works really well. Some day I will visit France wearing my nf France t-shirt.
See all the photos HERE!
My favorite time of the year is Christmas. Here are some fun photos taken around the office I wanted to post.
I will be here on the blog all week ready to blog with anyone who posts. Lets talk about what you have planned with family or friends.
Look forward to seeing you here.
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.
The Carolyn Farb Endowed Lecture in Neurofibromatosis,
“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″
Speaker: Roger Packer, M.D.
Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC
Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.
You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks
While Ed was in town this Thanksgiving holiday, he wanted to get some good old Texas Bar-B-Q. Lou took us to Goode Company where we had a great lunch. Ed wanted to know everything about JUST ASK, and how things are going at my office. It was great talking to Ed and catching up on things since I saw him last.
I hope you enjoy the photo. He now has a Just Ask! t-shirt and will be talking aboutf Just Ask and neurofibromatosis when he gets back to Pennsylvania. Thanks ED for the lunch. See you in D.C.!
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!
The Tumornators and Jeff Francoeur of the Atlanta Braves present the 2nd Annual Rock4Research benefit concert on Nov. 28 at Wild Bill’s. The concert features Matt Moore opening for headliner Rhett Akins.
Akins is known for country hits including “What They’re Talking About,” “That Ain’t My Truck” and the No. 1 hit “Don’t Get Me Started.”
Francoeur, Matt Stinchcomb of the NFL, Morten Anderson and other sports stars will spend time with guests at a VIP party beforehand. VIPs will also be able to enjoy catered food sponsored by Kroger, Chick-Fil-A and Chili’s. VIPs will also have the opportunity to bid in a silent auction featuring signed sports memorabilia and other exclusive items; VIPs are guaranteed to receive signed picture of Francoeur.
All funds raised by The Tumornators are directly donated to The Children’s Tumor Foundation. The foundation is dedicated to raising money and awareness for the painful illnesses Neurofibromatosis and Schwannomatosis.
Francoeur has supported The Tumornators since their beginnings in 2007, and has donated $500 to the Children’s Tumor Foundation™ on behalf of The Tumornators for every home run he hit in his 2007 season with the Atlanta Braves.
Rock4Research tickets will be available at the door and online, costing $20 for the VIP party and $10 general admission. The VIP party begins at 8:00 p.m., and doors open for general admission at 7:00 p.m.
The first 50 guests will receive a Rock4Research T-shirt signed by Francoeur.
Contact: Chad Leathers firstname.lastname@example.org 706.366.7321
Contact: Brittany Raines email@example.com 678-522-6534
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!!!
The Texas Renaissance Festival this weekend sounds like a terrific idea. I plan to be there Saturday to join in the fun. This will make my second year to attend. Last year was a blast and I’m sure this weekend will be just as fun as last year. See the link for more on the Festival. If you enjoy things like games food music then you will enjoy the Renaissance Festival. I will be there hope to see you. See the link for more information.
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?
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