Family Collage

Family Collage
Lots of Love in this Bunch!
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Wednesday, November 23, 2011

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 event and becomes a stronger person for it. For TJ Atchison, the events of November 14, 2011 certainly pushed him in a direction he never imagined.

Looking ahead to 2012, he is very excited to begin this new chapter in his life. He asks that you keep a close eye on Head in the Clouds, because your participation is necessary to make this a success!

In closing, I'd like to add that during this time of Thanksgiving, let's be thankful for all that we have - health, family, friends - and give of our time and energy to help the paralyzed back to health and on their feet in 2012.  Much love, Tory

Saturday, November 12, 2011

Spreading the Stem Cell Message

Several weeks back when I visited Roman Reed, President and Founder of the Roman Reed Foundation in California, he mentioned that he would like to travel to Alabama to meet the world's first stem cell candidate, TJ Atchison, in person. Roman, a football player at heart, a patient advocate by calling, a political leader by choice, has spent over a decade of his life in a wheelchair, advocating on Capitol Hill for a human clinical trial of this nature to begin. So when I called him a week later and told him that TJ would be thrilled to meet him over Veteran's Day Holiday, Roman immediately made arrangements to travel over 2000 miles to Chatom, Alabama for a three-day visit with TJ and his family.

The closer it got to Roman's and TJ's special meeting, the advocate spirit of Roman came shining through when he asked if any state legislators might be interested in joining he and TJ for dinner one evening. Wherever Roman goes, he is never afraid or bashful to spread the word about stem cell therapy and how it can rid the world of disease and disability.    

The idea of introducing Roman to our representatives had already crossed my mind. In fact, Senator Marc Keahey (D-AL) and I had spoken on several occasions about the hot topic issue of embryonic stem cell research and the clinical trial in which TJ had participated in. 

Senator Keahey, a conservative Southern Baptist from Grove Hill, was very interested in learning more about the stem cells used in TJ's therapy. Being a ProLife supporter and father of three young children, he wanted to learn more in order to take a stance one way or the other on the controversial issue.

After coordinating dates and times between TJ, Senator Keahey and Roman, we determined a time and location to meet, and the rest is now history.

Last night, a small group of ten individuals including TJ Atchison, his mother and stepfather - Mr. and Mrs. Carey McDonald, Roman Reed, Senator Marc Keahey, myself, my mother - Glenda Armstrong, Mr. and Mrs. Wayne Blackwell, and Bonnie Blackwell, gathered for dinner at Casanova's Rendezvous in Chatom, Alabama to discuss stem cell research and ways to encourage funding in our state for this novel therapy.

From left: TJ Atchison, Roman Reed, Senator Marc Keahey, and myself enjoying conversation with one another before the rest of our group arrived.

Roman (center) with a warm smile on his face as he shares a photo with Senator Keahey of Gwendolyn Strong, 4-year-old SMA patient from California, who has inspired him to find a cure for other malfunctions and diseases of the central nervous system.

SMA is a terminal, degenerative genetic disease that impacts the voluntary muscles in infants and children, including the ability to walk, sit, stand, eat, breathe, and even swallow, while cognitive ability is never affected. Ninety percent of children born with SMA die before the age of two. One in every 40 people or nearly 175 Million globally unknowingly carry the gene responsible for SMA. There is currently no treatment or cure and although SMA research is underfunded, it is extremely advanced. For more information about Gwendolyn or SMA, please visit the Gwendolyn Strong Foundation website at http://thegsf.org/.

TJ explaining to Roman and Senator Keahey how he made the decision to participate in Geron's stem cell clinical trial.
From left: TJ Atchison, my mother and best proofreader in the world - Glenda Armstrong, Roman Reed and Senator Marc Keahey
Roman took time to explain recent advances in stem cell research and answered questions from Senator Keahey regarding the importance of federal funding for this unique therapy.   
Front row: Bonnie Blackwell, Roman Reed, TJ Atchison. Back row: Mr. and Mrs. Wayne Blackwell, myself, Anita and Carey McDonald.
From left: myself, Bonnie Blackwell, Roman Reed, TJ Atchison.
Three of my four children saying goodbye to Roman Reed before he made the trip back to California this morning. From left: Carlie, Roman, Conner and Courtney. 

Goodbye for now to a great friend and remarkable person, Roman Reed!