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
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.
P.O. Box 934
Grove Hill, AL 36451
Dear Senator Keahey:
I support the TJ Atchison SpinalCord Injury Research Act, which would impose a small fine on reckless drivers,the proceeds going to the Atchison Spinal Cord Injury Research Fund, which isoperated by the University of Alabama at Birmingham.
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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
This Monday may seem like a typical start to the week for most, but for TJ Atchison, it's a day that he will remember always. The twenty-two year old nursing student is following his normal Monday schedule - attending classes, visiting patients, socializing with friends, but he's also squeezing in a press conference to share BIG news with all of you.
As I left for work this morning, a close friend called and asked if TJ's press conference was on schedule for today. A few minutes later, text messages started pouring in and my email inbox filled with the same question. So, I thought it would be nice to let all of you know that TJ's press conference is on schedule for 1 pm today at USA's Moulton Tower. He's not a bit nervous, just eager to share the exciting news with everyone.
In closing, I'd like to ask that you keep TJ in your thoughts and prayers today. Because of this brave young man, huge advances in spinal cord injury research are on the horizon! Best wishes, everyone! ~ Tory
Okay, friends! I've been given the go ahead to share details about TJ's press conference.
Senator Keahey confirmed this morning that he, TJ, and Roman Reed will hold a press conference at 1 pm, Monday, January 30th, in front of the University of South Alabama's beautiful Moulton Tower.
The purpose for TJ holding this press conference will be revealed Monday, so check back then to see what he, Senator Keahey, and Roman have in store for the great state of Alabama, and for the Nation.
Until then, I hope you all have a safe, meaningful, productive, and happy weekend! Much love, Tory
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
Sunday after settling the kids in from church, I made a flying trip to Atlanta in order to meet with TJ's doctors and to obtain necessary paperwork for my research in his story The Human Candidate.
It wasn't long after arriving at the Center that I realized how busy a Monday morning was for everyone - patients filled the waiting areas and staff members rushed about their day as if seconds remained for a game-winning touchdown.
With very few vacant chairs in the lobby area and an hour to spare before my first appointment, I began wandering up and down the hallways of the Shepherd Building. It amazed me that going into my sixth visit at the rehabilitation center, I had somehow overlooked a wall filled with beautiful artwork - most were pieces painted by former patients, awards recognizing staff and administrators for different achievements, and photographs of events held throughout the Center's thirty-five year history.
A few minutes later, a security officer passed and asked if I needed help finding my way. I suppose my large duffel bag filled with notebooks and reference books was a dead ringer for not being there for medical reasons. I explained that I was waiting to interview a staff member, and mentioned that I would love to find a quite place to write. She smiled and pointed me in the direction of the Noble Learning Resource Center which was just down the hallway and to the left.
In the few steps it took to reach the library, I passed a couple standing near their son in a wheelchair and inadvertently overheard their conversation. Suddenly the memories of TJ being a patient at the facility quickly came back to me. The same determination and strength heard in this family's conversation was like rewinding six months to the time when TJ was dealing with the same uncertainty and reality of being young and disabled. With motivation like no other, and a rush of ideas stirring inside my head, I wasted no time in finding the perfect chair inside the library. I must admit, this is the most intense writing I have ever experienced, as I felt that I was no longer writing for TJ alone, but for millions of other spinal cord injury patients out there who pray each day for a cure for paralysis.
Not even a page into my writing, a volunteer at the library - Tony Boatright who is also a spinal cord injury patient, pushed his chair next to me and asked if I needed anything before he left for lunch. I smiled and shook my head no. He paused and looked at me curiously - again, the bag full of books and me intensely writing is apparently enough to raise an eyebrow - and asked what I was working on. I explained that I was writing a book about spinal cord injury patients, and immediately conversation took off. For five minutes, Tony and I chatted about the Center and the resources available there for spinal cord injury patients. He was also interested in my writing, but never once asked the topic of the book. It wasn't until a phone call early this morning that I revealed to Tony the concept behind TJ's book. Tony was very happy to hear of TJ's progress, and like many others, he was enthusiastic to learn that TJ's story is well on its way to being published.
This Dear Friends, is why I am passionate about bringing The Human Candidate to life, because I have witnessed how life-changing TJ's story is to those who hear it. Many disabled people anticipate the results of this clinical trial. They are hopeful that a cure for spinal cord injury and chronic illness will be in their lifetime. Indeed, TJ's optimism and strength has given them a
It was an organized effort by many to select T.J. Atchison as the first spinal cord injury patient to participate in such a landmark clinical trial. When it was time for a decision to be made by T.J. and his family, little did they consider the procedure to be as monumental as it was. After all, T.J. was a mere nursing student at the University of South Alabama trying to make his final effort to become a college graduate. He had no intention or desire to become a famous person; his only wish was to walk again.
Film crews from ABC News traveled to small town Alabama last week to interview T.J. about being the first spinal cord injury patient to be injected with human embryonic stem cells. In the photo above, T.J. and Cameron Waite act more like brothers than first cousins as they play a quick game of basketball.
ABC News Correspondent, Steve Osunsami, extends a hand to Anita McDonald as she reveals what it felt like to hear the devastating news of her son's accident.
Through it all, T.J. is not interested in being some sort of hero, but if he is presented with the opportunity to help his fellow man and future sufferers of degenerative medical conditions, he believes it is his religious and ethical obligation to be an advocate for this clinical trial—and the research behind it—that may just end up giving millions of disabled people the ability to live a normal, productive life.
Little sister Alyssa enjoyed spending the afternoon with T.J. as he interviewed with Steve Osunsami from ABC News.
T.J. enjoyed a few laughs with Steve Osunsami and the film crew from ABC News.
With no hesitation whatsoever, T.J. has asked for my help to co-author his story, The Human Candidate, in effort to share his identity and perception as being the first recipient of HES cells with the world.
There are three excuses for why I have not updated my blog in over a month: 1) Every spare minute away from a full-time job and the four cuties that call me mommy has been dedicated to helping TJ write his story, The Human Candidate. 2) TJ wanted to complete a full month of Beyond Therapy in order to share his experience and update you on his progress. 3) He wanted to announce his plans of returning to nursing school in the Fall - something TJ has looked forward to since his accident in September.
TJ and I interviewing his classmate and friend, Mary Lauren Bailey and his Professor, Joe Farmer at The University of South Alabama in Mobile. *Brooke Helms Photography, MobileBeyond Therapy
Since January - when Day Program at Shepherd Center came to an end, TJ
hoped his application to Beyond Therapy would be accepted. Initiated in 2005, Beyond Therapy is yet another of Shepherd's boundary pushing programs. With facilities in Atlanta, GA and Franklin, TN, this rigorous program continually operates at full capacity - between 30 and 35 clients, each of whom receive some 9 to 15 hours of physical therapy a week. Yet with a perpetual waiting list of 50 names long, TJ
knew it would be some time before getting in.
It was during his follow-up appointment at Shepherd Center in May that he learned a spot had opened for Beyond Therapy at the facility in Franklin, TN. Though it was a long way from Chatom
- a little town in the pines of south Alabama, TJ
knew he had potential to do more and wanted to keep going. Therefore, the following Monday, TJ
, his mom, stepfather, teenage brother and 6-year-old sister made the seven hour trip to the hills of Tennessee.
had a "new goal to work on," to get better and stronger - both physically and emotionally.
His therapy began from the minute he arrived. In addition to Physical Therapy (PT) and Occupational Therapy (OT), he worked with specialists on strength-building and core exercises to help those muscles below the level of his injury recover and possibly demonstrate voluntary motor activity.Milestones
Going to therapy week after week, TJ
learned that teaching his upper body muscles to control his lower extremities was an exhausting ordeal. But he never once gave up. The gradual improvement day after day is what made it all worthwhile. "It was the little things like pedaling a bicycle for a few seconds on my own that made me push harder the next day," he explained.
A huge milestone that TJ
remembers about Beyond Therapy is the day he was able to crawl on the floor - with quite a bit of assistance, true, but he was moving forward. "It sounds funny to say it, but it was so exciting to move forward without the use of my wheelchair.
Here in this world, there are many beautiful, wonderful, and sometimes terrible things that happen. Some experience more or less of each, but for TJ Atchison, he has witnessed more life changing events in his twenty-two years than most people will see in a lifetime.
His car accident last September was a walloping blow - leaving him paralyzed from the waist down and a feeling of uncertainty for what the future would hold. Then in October, becoming the first participant in Geron's stem cell clinical trial made him hopeful that life would not be as difficult as he once thought. This trial had become a huge part of his life, but it was not going to consume him. TJ quickly realized that God had a bigger plan for his future, and he was not going to question another minute of another day.
The children and I were able to spend some time with TJ and his family this morning before he headed back to college. It was heartwarming to witness the love and support shown from his family and friends - his roomate, Kyle Dees carried box after box to the car and reassured TJ's parents that he would take the very best care of their son.
As you can see in the photo above, TJ is not allowing his circumstances to keep him from reaching his goals. He is more determined than ever to return to the University of South Alabama Nursing School in Mobile, Ala. and complete his nursing degree. And his mother, Anita could not be happier for her oldest son. For months, she has devoted every hour of each day to TJ, waiting on his every need and making sure his spirits remained high. Certainly this is a difficult time for her to let go, but she sees the excitement in his face and knows this transition of returning to college is exactly what her son needs.
For those of you who know TJ Atchison well, I'm sure you will agree that he is one of those kids who knocks it out of the park each time he's up to bat. He never gets down or frustrated with being young and disabled. Instead, he has turned this negative experience into something astounding - a true testament of TJ's faith in God!
It is his goal to be an inspiration to young and old, which as you can tell by the smiling faces above, my little ones think TJ Atchison hung the moon! For thousands of other young and disabled, TJ hopes to show it is possible to live a normal, productive life, and that their dreams can be fulfilled with a little patience and determination. He believes that it's how you react to life's surprises that determine if you can hit the ball out of the park or simply strike out.
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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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 resesarch 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.
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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Last year at this time, my entire life was being turned upside down - my marriage of eleven years was falling apart and I was drowning in the fear of how I would raise four children on my own. What kept me from slipping into a depression or questioning Why me?
My faith in God, a wonderful support group of family and friends, and a young man named TJ Atchison got me through this major life crisis!!!
A few months earlier I sat by TJ's bedside at the Shepherd Center in Atlanta, reduced to tears by the circumstances of his spinal cord injury. For over three hours, I fought an emotional meltdown because I could not imagine this young man in a wheelchair for the rest of his life. How was he holding himself together so strong?
Even going through such a time of uncertainty, peace seemed almost unnatural considering the hugeness of what he was experiencing. He was not in denial. TJ was holding tight to a peace that could only come from God. He had witnessed years of God's work in his family - a grandfather who had danced with death more than once, and a young cousin living each day to its fullest after being diagnosed with cystic fibrosis.
Yes, life was certainly trying to wear me down, but after spending time with TJ and his incredible family, I was able to see that God would provide for and keep my family strong through everyday trials and tribulations. I'd seen firshand that "We also rejoice in our afflictions, because we know that affliction produces endurance." (Romans 5:3)
With many of us wondering what 2012 will bring, I want you to know that enduring faith can help you for when
and not if
life tries to wear you down. Best wishes for a happy, healthy, and blessed New Year, everyone!!! Much Love, Tory