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Viewing: Blog Posts Tagged with: Roman Reed, Most Recent at Top [Help]
Results 1 - 7 of 7
1. Ceremonial Bill Signing for the TJ Atchison SCI Research Program

From left: Senator Keahey, TJ, and Governor Bentley
Yesterday Governor Bentley officially signed TJ's bill which approved funding for the TJ Atchison Spinal Cord Injury Research Program. Sponsored by Senator Marc Keahey (D-Grove Hill), this initiative was passed by the Alabama State Legislature on May 16th which allocated $400,000 in research funding to the University of Alabama Birmingham School of Medicine.

Details of the bill and the work that we did to accomplish this goal are available here.

A recap of the ceremony

Representative Elaine Beech from Washington County, friends, family, supporters of TJ, along with Dr. Candace Floyd and other UAB staff  had the opportunity to meet with Governor Bentley and the legislative bill author, Senator Marc Keahey, for a ceremonial bill signing at the Capitol. Those of us who were lucky enough to attend the ceremony were pleased to share this special day with TJ and his family.

Governor Bentley having a private chat with TJ 
We knew that Governor Bentley was extremely busy and had many things on his agenda (such as visiting families of south Alabama who were impacted by storm, Isaac, earlier in the week), and so we expected that the ceremony would be quick. However, when the Governor came to meet us in the beautiful Old Office Chamber Room of the Capitol, he took the time to speak with TJ about his goals for being a patient advocate, then asked if we had any questions for him.

My daughter Catie, Governor Bentley, and TJ's sister Alyssa
Governor Bentley was such a gracious host. He held the hands of our little ones and encouraged them to be great students, friends, and to work hard in their schools and communities.

From left: Senator Keahey, Tucker McDonald, Anita & Carey McDonald, Governor Bentley, Representative Elaine Beech; Bottom: Alyssa and TJ
When there were no more picture requests or questions left to ask, the Governor seated himself at a desk in the center of the room and we gathered around him for the bill signing ceremony. After we had our group photo taken, the Governor handed out pens with his name on them to TJ and the children gathered around his chair.

In all, Governor Bentley spent about 25 minutes with our group. It was obvious that he enjoyed chatting with us and with TJ, as his staff finally had to inform him that it was time for the visit to end. Indeed, we were honored by the whole experience!

After tons of persistence and determination, TJ and I were thrilled to say, "WE DID IT!" 
Celebratory luncheon
Program Administrator for the TJ Atchison Spinal Cord Injury Research Program,
Dr. Candace Floyd (standing), welcomed our group to the special luncheon held at
Central Restaurant in Montgomery.
 
Of course our hearts were filled with such joy and happiness for what had been triumphantly accomplished, but our group sorely missed the company of our dear friend and ally Roman Reed .

November 11, 2011, the beginning of "TJ's Law"
 From left: Me, Bonnie Blackwell, Roman Reed, and TJ
Because of Roman's commitment to pass AB 1657 ( This bill will raise funds to sustain the Roman Reed SCI Research Fund at UC Irvine’s Reeve-Irvine Center) in his home state of California, Roman was unable to make the trip to Bama for Governor Bentley's bill signing.

TJ's program at UAB would never have been possible had it not been for Roman's instrumental roll in the formation and passing of Senator Keahey's legislation. So on behalf of our TEAM, I would like to say thank you to Roman for everything he has done to encourage and help TJ in his mission for paralysis cure.

"From Alabama to California, TJ and I fight together so that one day soon, all who suffer from a spinal cord injury / paralysis can stand with you!" ~ Roman Reed

Please stay tuned to Head in the Clouds as more pictures from this special day will be posted soon. Take care and have a wonderful Labor Day weekend!

Much love, Tory




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2. It's Official: Funding for the TJ Atchison Spinal Cord Injury Research Program has passed in Alabama!




(AP Photo/Dave Martin, file photo from April 12, 2012, as the Alabama House is seen in Session.)
I am thrilled to report that funding for the TJ Atchison Spinal Cord Injury Research Program has been approved by the Alabama State Legislature and is expected to be signed by Governor Bentley very soon. Sponsored by Senator Marc Keahey (D-Grove Hill), this initiative will provide approximately $400,000 in research funding to the University of Alabama Birmingham School of Medicine.

The money will be administered by Dr. Candace Floyd, Interim Director of Clinical Research for the Department of Physical Medicine and Rehabilitation. "This is an important initiative that will go a long way toward finding a cure and alleviating the side affects that spinal cord injury patients experience," said Floyd.

Senator Keahey said, "I am honored to bring the TJ Atchison Spinal Cord Injury Research Program to the forefront of Alabama's medical research innovative efforts." He added, "This is cutting edge research and something I feel Alabama will benefit from having on hand."

The initial method of funding for this research program was to impose a small fine on reckless drivers through Senator Keahey's bill SB338, the proceeds going to the Atchison Spinal Cord Injury Research Fund. This approach was to mimic that of California's  "Roman Reed Law" which has made a significant impact on SCI research in America, and across the world.

However, because this research impacts more than the field of medicine, Senator Keahey received bipartisan support to embed $400,000 as a line-item in the ETF (Education Trust Fund) budget for the T.J. Atchison Spinal Cord Injury Research Program. "Having the support of both Democrats and Republicans was a confirmation of how important this initiative is to our state. Not only will this research advance our knowledge of the spinal cord, it will also support post doctoral research and encourage the best and brightest young scientists to the field of spinal cord injury research, right here in the great state of Alabama."

Spinal Cord Injury Facts:
  • It is estimated that the annual incidence of spinal cord injury (SCI) is approximately 40 cases per million population in the U. S. or approximately 12,000 new cases each year.
  • The number of people in the United States who have SCI has been estimated to be approximately 265,000 persons.
  • Since 2005, motor vehicle crashes account for 40.4% of reported SCI cases.
For more SCI Facts, please visit the 0 Comments on It's Official: Funding for the TJ Atchison Spinal Cord Injury Research Program has passed in Alabama! as of 5/17/2012 12:15:00 PM
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3. Take Everything In Stride!

When news broke last Monday of Geron Corporation's decision to halt the world's first clinical trial using human embryonic stem cells, many in the stem cell community - patients, scientists, advocates - wondered how TJ Atchison would respond to the announcement.

Being the first to heroically and courageously volunteer for the trial, many feared TJ would be devastated and give up hope that a cure for his condition was possible. It was indeed a time of uncertainty for the twenty-two-year-old, considering he had been told the only reason the trial would be placed on hold was if a serious adverse event occurred with any of the patients injected with the cells.

However, in keeping with his belief that everything happens for a reason, TJ prayed this was a temporary setback, and felt certain another company would pick up where Geron had left off. "Once you've been through what I have (being paralyzed at the age of twenty-one), you can deal with just about anything - even the challenge of waiting for a clinical trial to resume," he stated. "I've learned to take everything in stride."

There are now five patients enrolled in the GRNOPC1 trial, the latest participant agreed to the procedure even knowing the biotech company would soon discontinue further developments of it's stem cell programs and focus solely on their novel cancer program.

Just two days before Geron's Press Release, TJ and Senator Marc Keahey (D-AL) met with close friend and patient advocate Roman Reed to discuss the importance of funding for spinal cord injury research in America. TJ knew if the treatment posed no safety risks to humans, then it must be funding that led to Geron's decision to halt the trial.

Without hesitation, TJ picked up his phone and dialed Roman's number - it was this moment when he took ownership of being the first human candidate for hESC therapy. He went from being a participant to becomming a leading patient advocate for stem cell research.

Nov. 19, 2011, TJ (first player from left) posing with his team, the Univ. of Southern Mississippi TLC Golden Eagles, in Gulfport, MS. The Golden Eagles defeated New Orleans with a final score of 43-38. 

After bouncing around ideas with Roman for over an hour, the two created a plan of partnership for raising awareness and funding for spinal cord injury research in America. For TJ's family and friends watching in the distance, it was remarkable to see him turn such a negative event into something extraordinaire. The confidence in his voice and determination in his eyes was stronger than we had ever seen before.

As I looked on, I couldn't help but think how incredibly strong TJ and his mission had become. Many of you reading will agree that stories of inspiration usually include a remarkable twist - a moment when the main character experiences a life-changing&nb

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4. A big announcment on the way to Alabama!

Remember when TJ Atchison, Roman Reed, and Senator Keahey got together in November? Well, a lot has taken place since that evening in Chatom, Alabama.

Third from left, Senator Keahey shares with the group his desire
to make spinal cord injury research a priority in Alabama.  
As I type this blogpost tonight, these incredible men are making final preparations for a press conference that will be held before January's end. TJ plans to invite local and national media outlets to join him, Roman and Senator Keahey (D-AL) as they reveal exciting news about spinal cord injury research in Alabama. 

For those of you who know TJ, Roman, and Senator Keahey, you understand the meaning behind my words, A BIG ANNOUNCEMENT. Indeed these gentlemen pour their hearts and souls into everything they do, so it will definitely be an event you will want to follow closely. 

Please understand that I do not want to disclose any more information about this announcement, because TJ has waited months to share this exciting news with you; it is not my place to say or do anything to jeopardize this moment for him, I simply want to make people aware that something BIG is in the works for this young man. It is sure to be an exciting time for all spinal cord injury patients, the State of Alabama , and for the Nation!
 
Until then, TJ has asked that I extend his sincere appreciation for all of the support and prayers that have been lifted up to him and his family.  He feels blessed beyond measure to have each of you in his life, and so do I!  Good night, everyone. Much love, ~ Tory

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5. Why We Need Your Letters of Support!





Why We Need Your Letters ofSupport!
Help us fund the TJ Atchison Spinal Cord Injury Research Act - you can make adifference in the research for cure by writing a letter of support to yourlocal representative.
Senator Marc Keahey is the authorof the TJ Atchison Spinal Cord Injury Research Act. He will face the budgetbattles, and political debates of why this research is necessary in Alabama. Wemust not let him fight empty-handed.
He needs letters of support fromAlabamians, and also from affected individuals and groups from everywhere—paralysis knows noboundaries. Follow this link http://www.legislature.state.al.us/to search for your representative by zip code.
We ask your help.Here is a sample letter, use all or some of it, if you like, or write your owncompletely. Please write something, and do it soon, please: the 2012Legislative Session begins tomorrow, February 7th. Emailsand ground letters must go out very soon, tonight if possible. Thank you forsupporting the TJ Atchison Spinal Cord Injury Research Act.



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6. Rally Time for Roman!

It's rally time, friends! 
Roman Reed has been instrumental in the formation of SB338 in Alabama – the T.J. Atchison SPINAL CORD INJURY RESEARCH ACT. “TJ’s Law” was filed into legislation by Senator Marc Keahey on February 16, 2012 with funding to be allocated via the University of Alabama at Birmingham.

The Roman Reed Spinal Cord Injury Research Act has made a significant impact on SCI research in America, and across the world. As a witness to this devastating injury, I cannot stress how important the passing of AB1657 is for the future of therapeutic research discoveries in paralysis. “Roman’s Law” must be supported, so please join in support by cutting & pasting the letter below and send ASAP to Assembly Member Fuentes. 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


We need your letters of support to pass AB 1657. Please write for paralysis cure!

Felipe Fuentes - Chair Democrat-39 (916) 319-2039  Assemblymember.Fuentes@assembly.ca.gov

Cc: jeff.barbosa@asm.ca.gov.  

 (Sample letter can be cut & pasted)

Dear Chair Felipe Fuentes,

I, ...... ........, strongly support California AB 1657, a one dollar surcharge on all moving traffic violations to fund the Roman Reed Spinal Cord Injury Research Act.

AB 1657 provides annual funding for research of spinal cord injury and related ALS, Alzheimer's, Parkinsons', SMA and related neurological conditions to be able to one day realize the dream of paralysis cure.

Supported by UC, CIRM, Bob Klein, Irv Weissman, Paul Berg, Craig Newmark, Stem Cells Inc., CA Stem Cell Inc. Hans Keirstead, California Healthcare Institute, Christopher & Dana Reeve Foundation, Art Torres, Duane Roth, Stu Gordon, Shinya Yamanaka, and the USC School of Politics among many others!

There is a clear nexis between 46% of all spinal cord injuries and 60% of children's SCI paralysis, (Mayo Clinic), caused by auto accidents and fining reckless drivers.

AB 1657 creates jobs, brings money into our State and enables the research that is the hope for paralysis cure.

AB 1657 Ensures CA's leadership in Biotechnology. Roman's Law gives CA Scientists the seed money to Prove in principal and establish data to leverage the huge funding sources of NIH, CIRM, etc.

Fiscally Responsible: No State funds. Creates and keeps Whi

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7. Stem Cell Pioneers

Since the beginning of documenting TJ's story in November '10, I have prayed for the day when I could sit in a room with stem cell pioneer Dr. Hans Keirstead and Roman Reed of Roman's Law and ask questions about stem cell therapy and the science behind Geron's clinical trial . If only I could have an hour to speak with these men, I would say to myself while sitting at my computer until midnight, searching the public domain for any overlooked videos or articles mentioning their names.

Because I am abundantly optimistic and tenacious in spirit when it comes to something I feel passionate about, I convinced myself that everything would fall into place and that somehow, someway, TJ and I would have the opportunity to speak with Hans and Roman.

With the diligent help of our literary agent Mac Mackie, our prayers were answered, and TJ and I received an email from a major advocacy group, offering to put us in direct contact with anyone in the stem cell community that we desired to speak with. Of course we didn't hesitate one minute in responding to this generous offer. We went for it, and fast!

Fast forward two weeks later, I was heading home from work and just a few blocks from Courtney's preschool in Chatom - the one in which TJ's mother Anita is the director - I received a text stating that Hans Keirstead had agreed to participate in an interview if we were interested. It's almost hilarious looking back on it now at how I wheeled my Suburban into the daycare parking lot and ran inside to tell Anita the exciting news. It was moments like this, seeing the smile on her face, that fueled my efforts and made me work even harder on The Human Candidate.


And so the following week, with my itinerary folder in one hand and resource books tucked away in my carry-on bag, I departed Mobile Regional Airport en route to Santa Ana, California to meet and interview Dr. Hans Keirstead and Roman Reed. Of course this was a golden nugget opportunity for the research portion of TJ's story, but there was also a yearning to connect these amazing men to TJ. As the plane reached altitude above the clouds, and my nerves settled to their normal state, I looked out my window at the beautiful sunset and thanked God for allowing things to fall into place for TJ and his story.

I have always believed that pictures often times tell a story better than the written word, so please enjoy the pictures below that were taken during my trip to Irvine and Valencia, California!


I will always remember this visit with Hans Keirstead at the Sue and Bill Gross Research Center at University of California in Irvine. Hans is the brilliant neurobiologist who invented the protocol in which paralyzed rats were injected with human embryonic stem cells and later regained sensory and motor function at the site of injury level. His invention was patented and sold to Geron Corporation in Menlo Park, California for use in human clinical trials. TJ Atchison is the first spinal cord injury patient enrolled in this federally regulated clinical trial.

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