An Unforgettable Birthday: Meeting Ms. Anonymous

Thirty-Five! Yes today is my special day and I am super excited to be alive and well and smiling through the highs and lows that each day brings!

My birthday has been fun and special in many ways ~ from morning coffee with a dear friend, to tossing around ideas for a ribbon-cutting ceremony, and ending with a delicious strawberry cake made by my sweet children.

 

 

 

These are the precious moments that I cherish and hope to remember for many years to come.

I also had the privilege of meeting an amazing woman today who is known as "Ms. Anonymous" here at Head in the Clouds.

On August 15th, "Ms. Anonymous" left a heartfelt comment on my blogpost "We're Moving!" 

She wrote: "I am so glad that one of my Facebook friends sent me the information about your blog!!! Birmingham, will be happy to have you, and I, would love love love, to meet you. I am a 46 year old, wife and mother. I am also a paraplegic of 29 years, due to an automobile accident in 1983!! Please, if you can fit me in to your schedule, I would love to meet you and chat. I can be reached at xxx-xxxx. I live in Warrior, which is about 15 miles north of Birmingham. Good luck with this new adventure!"

Since receiving her comment in August, I dialed her phone number at least a dozen times but was unsuccessful each time. But on Tuesday, I tried again, and was thrilled to hear a voice on the other end! 

So without further adieu, please let me introduce you to the incredible Melissa Bayles~Fendley, also known as "Ms. Anonymous!"

Melissa is no stranger to UAB or to the Spain Rehabilitation Center. From 1994 - 1998, she served as the spokesperson for the "Think First" Program at UAB and even represented our great state as Ms. Wheelchair Alabama.  To learn more about Melissa please click here. 

For nearly two hours we discussed our hopes, dreams, and visions for what the TJ Atchison Spinal Cord Injury Research Program can do to help our friends and loved ones living with SCI / Paralysis in Alabama and across the country. "Researchers have made incredible strides since my accident 29-years-ago," Melissa said. "I am excited to see what will come from Dr. Floyd and her research lab at the Department of Physical Medicine and Rehabilitation!"
 

 



As I blow out my bazillion candles tonight ('-'), my wish is that of paralysis cure for TJ, Roman, Bonnie, Katy, Katie, Melissa and for the millions of others who make this same wish each and every day!  

Goodnight, everyone! I hope you all have a great rest of the week, and thanks again Melissa for making this birthday truly unforgettable!  Much love, Tory

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

We're Moving!

For those of you who know how close we are to our family in Millry, this title certainly caught your eye, right? :)



My little munchkins: Courtney (inside the box), Catie, Conner, and Carlie holding her doll Rocky

As I finish packing our things for the move to Birmingham this week, I am CRAZY busy scheduling last minute playdates for my children and wrapping up my job responsibilities at CWEMC.  There has been so much activity in our lives these past few weeks, that I've not had much time to really let this move sink in, until this evening. 

The children and I started praying about relocating after "TJ's Law" passed in May, and the recruiting process began for me to help build this special program - one which is VERY dear to my heart and will benefit thousands who live with or care for a loved one who suffer from a spinal cord injury.  I am passionate about helping the paralysis community, and I feel it is such an honor and privilege to be involved with this incredible program. 

It is definitely hard leaving those we love and all that is familiar to us in Washington County, especially with most of our family here, a job that I have loved since day one, a beautiful home on my father's property, and a church family and school we adore. 

But God has a bigger plan for us!  And after countless back porch conversations with my mom and sister, I feel a tremendous sense of peace about this huge leap of faith.  The children are beyond excited, which is a total confirmation from above that this is best for my family.

I can't wait to unpack more of the story with you in the months ahead, but for today, I just wanted you to know our BIG news.  Cheers to the future of paralysis cure, moving trucks, boxes & all!

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 National Spinal Cord Injury Statistical Center, Birmingham, Alabama.

In closing, I'd like to say that the support from all of you is what has kept us energized and focused on strengthening spinal cord injury research in Alabama. Once again, thank you from the bottom of my heart for supporting this important cause. Giving all the glory to God: WE DID IT!!! Much love, Tory

TJ's Visit to the Spain Rehabilitation Center!

I spoke with TJ this morning, and he is still on cloud nine from yesterday's visit to the Spain Rehabilitation Center in Birmingham. This trip was important to TJ for many reasons: to build awareness for the TJ Atchison Spinal Cord Injury Research Act in Alabama; to meet doctors at the Spain Center who champion health and research for spinal cord injury; and to show his dedication and commitment to being a patient advocate for paralysis cure.

With about 15 supporters of "TJ's Law" making the trip to Birmingham, including mentor Roman Reed from the Roman Reed Foundation in California, this first face-to-face meeting for TJ and Dr. Candace Floyd was a long-awaited celebration and memorable jump start to TJ's decision of becoming a patient advocate. "I still can't believe how far we have come since that first meeting back in November," TJ said.

Just before lunch, Dr. Floyd introduced Dr. Richard Marchase, Professor and Vice President of Research and Economic Development, and Dr. Robert Kimberly, Professor and Senior Associate Dean for Research.

Dr. Marchase and Dr. Kimberly took time getting to know everyone and gave assurance that the University of Alabama Birmingham was of tremendous support for the TJ Atchison Spinal Cord Injury Research Act. "This legislation is very important for all Alabamians living with spinal cord injury, and we will be great stewards of the funds generated from it," stated Dr. Marchase.

Next up, Dr. Floyd explained the new frontiers in translational research at UAB. Her impressive powerpoint fueled our interests in the scientific dynamics of spinal cord injury research, and helped us to understand how critical funding is to take these incredible ideas from animal studies to human clinical trials. We were encouraged by Dr. Floyd's closing words: "When 'SB338' is passed and the ball is tossed to us, we are going to catch it and run with it!"

Other UAB presenters included Dr. Robert Brunner, Medical Director of the Spain Rehabilitation Center and Associate Chief of Staff; Jacquelyn Green, Director of Research Services of the Dept. of Physical Medicine and Rehabilitation; Dr. Yu-Ying Chen, Associate Professor of the Dept. of Physical Medicine and Rehabilitation, PI SCI Model System; Dr. Danielle Powell, Assistant Professor of the Dept. of Physical Medicine and Rehabilitation; Dr. Amie Jackson, Professor and Chair of the Dept. of Physical Medicine and Rehabilitation, PI SCI Model System; and Yvonne Akins, Executive Administrator of the Dept. of Physical Medicine and Rehabilitation.

Not only was Wednesday's meeting a great opportunity to bring together fellow supporters of spinal cord injury research, it was the perfect forum for exchanging innovative ideas of making this important research a priority in the state. It was a day filled with motivation, new friendships, and a common goal for all: to get the paralyzed back on their feet.

The next few weeks will determine if paralysis cure becomes Alabama Law... PLEASE SUPPORT SB338! 

*An inside look from our friends at Birmingham News ABC 33 / 40 ~ Bill to fund spinal cord injury research gains momentum in legislature by Haley Westbrook

Senator Keahey's press release for "TJ's Law!"

Very exciting news! Follow this link to read Senator Marc Keahey's Press Release for "TJ's Law."

The beginning of "TJ's Law!"

Very similar to what Roman Reed did in 1998 with the Roman Reed Spinal Cord Injury Research Act of California, the brave TJ Atchison hopes to accomplish this and more in the great state of Alabama.


Yesterday, before a crowd of fifty close family members and friends, Senator Marc Keahey announced his plans to introduce the TJ Atchison Spinal Cord Injury Research Act in Alabama. This legislation would use funds generated from traffic violations such as reckless driving and DUI to support spinal cord injury research in our state.

Shortly after explaining the framework behind "TJ's Law," Senator Keahey passed the microphone to the young man who inspired him to take such a political stance on spinal cord injury research.

With a sweet smile across his face, and a determined tone in his voice, TJ Atchison read from a crinkled piece of computer paper in his lap:

"Good afternoon! I am TJ Atchison, the world’s first participant in our nation’s first ever federally approved clinical trial using human embryonic stem cell therapy and co-author of The Human Candidate. I am paralyzed from a car accident and fighting for a paralysis cure.

In firmly believing in the love, grace and sovereignty of God in creating and embracing human life, I also believe in the justification for sustaining a quality of life for myself, the 1.8 million Americans living with spinal cord injury paralysis, 5.6 million Americans suffering from some form of paralysis and all people living paralyzed. It is my desire to convey a message of hope and peace and provide answers for why I decided to participate in the highly controversial clinical trial that began on October 8, 2010.

So now I ask for your help in making the dreams of a paralysis cure a reality by supporting the TJ Atchison Spinal Cord Injury Research Act Authored by our great Senator Marc Keahey!

Our Law will impose a small $1 added sur-charge on all moving traffic violations, $5 for aggravated moving violations, and $10 for DUI - no taxes, or State general fund withdrawals – to fund the research for paralysis cure while creating jobs and giving hope to the paralyzed – all, right here within our great home State of Alabama.

Your support will strongly impact whether or not I spend the rest of my life confined to a wheelchair or accomplish my dream of walking again. We must fund the research for spinal cord injury cure.

I ask you: PLEASE STAND WITH ME, SO WE CAN ALL STAND WITH YOU!"

After a brotherly handshake, TJ passed the mic to his friend and mentor, Roman Reed.
Instantly, the advocate spirit came shining through, as Roman educated the crowd on the importance for finding a paralysis cure.

"The very first mention of paralysis was written inside the walls of an Egyptian tomb. It read, 'deny the paralyzed soldier water, for there is nothing that can be done.' For too long, that was the truth, but not now. Not anymore! There is MUCH that can be done, that WILL be done, and SHOULD be done."

Roman then shared a quote from one of his boyhood heroes, Jackie Robinson, "A life is not worth living, EXCEPT for the impact it has on others."

In closing of TJ's press conference, Roman referenced to a letter written by the late Christopher Reeve. The words from this letter sent chills across my arms and brought tears to nearly everyone in the crowd.

Roman read with such proudness and strength the words of his hero and friend. "Christopher Reeve wrote to me shortly after my football accident, saying 'One day Roman and I shall stand up from our wheelchairs and walk away from for forever.'  Now that did not come in time for our Superman, but with your help (defining the audience), the cure will happen for me, TJ, the 1.8 million Americans suffering from spinal cord injury paralysis, and the 5.6 million Americans suffering from some sort of paralysis."

As the afternoon came to an end, it was in total agreement from the audience that this is where we go from here - the beginning of the future for research and healing!

I'd like to end by saying that it was an incredible honor and privilege to take part in yesterday's events. I am so proud of Senator Keahey - our knight in shining armor, the brave TJ, and the incredible Roman Reed for making this day happen. The brave and righteous actions taken yesterday will bring about our paralysis cure for today and tomorrow. Take care everyone, and have a great rest of the week! Much love, ~ Tory