Hi, my name is Justin and I'm 13 years old.
Almost two years ago, my parents noticed that I was having trouble walking straight and sometimes I would just fall down. So, they took me to a bunch of doctors who ran tons of tests. DNA tests confirmed that I have a very rare genetic mutation called Giant Axonal Neuropathy (GAN).
I'm sorry to say that a few months after my diagnosis, we found out that my eight-year-old sister, Lexi, also has GAN. While she has no visible signs of the disease yet, we both face the same fight. Lexi and I both have the tell-tale curly hair that is common with kids with GAN. So, while my parents held out hope that she didn't have GAN, the tests proved otherwise.
My fraternal twin brother, Jared, doesn't have the disease but he is a carrier. We couldn't be more different. I have curly hair, he has straight. He likes to get up early, I like to sleep late. He likes to exercise; I'd rather play video games. My parents say we fight each other just because we can.
Unfortunately, GAN comes with a fatal diagnosis (which is why it's mostly kids and a few young adults who have it). That's a big pill to swallow. But I'm a fighter and that's why I started this page. Up until five years ago, there wasn't even any research being done on this. I am one of about 50 kids in the world who have this disease.
I am lucky because my case of GAN is mild so far. Most of the other kids are not as lucky and more often than not, GAN wins. But with your help, we can beat GAN. I need to beat GAN.
Our biggest challenge with research is that there is no Federal Funding for this disease because it isn't an epidemic. There are no celebrities or telethons raising public awareness. In fact, there is only one charity, Hannah's Hope Fund, which is raising money to fight this disease. It was started when the parents of a four year old girl named Hannah found out she had GAN. Over the past 5 years they have raised significant money for research, but they need more. I need your help.
The researchers have been able to get some really good results in the lab but the work is far from done. We need your help to cure this terrible disease and Hannah's Hope Fund is the way to do it. Both of our children are really lucky they appear to have a slower progressing case of GAN due to their specific mutation. He is still able to walk.
The scientists working funded by Hannah's Hope Fund have developed what they hope is a cure. It's called a "GAN gene delivery" to the central nervous system and we hope a clinical trail gets approval to start as early as March of 2014. While the clinical trial will take place at the National Institutes of Health, there are many parts that Hannah's Hope Fund will have to pay for. While the trial will get a healthy copy of the GAN gene to the central nervous system, Hannah's Hope Fund is working to on a drug for the nervous system that may also be used to fight the effects of other diseases like ALS, Alzheimer's Disease, Parkinson's Disease, Frontal Lobe Dementia with Louis bodies, Alexander Disease and other forms of inherited neuropathy.
Justin is scheduled to be a part of the GAN Natural History Study at the National Institute of Health and will hopefully be chosen to participate in the clinical trial although he will not be in Phase 1 of the trial.
Please help me triumph over this disease by donating all that you can to cure GAN....
To help me raise awareness and money for GAN research, my twin brother Jared, competes in a number of triathlon races in our honor. In 2013, he completed a half ironman distance race! What's remarkable is that only one other 12 year old has ever competed in such a race! He swam, biked and ran over 70 miles! Our goal is to help raise money so those of us with this disease can continue to SWIM, BIKE and RUN. We want to be just like every other kid.
His next competition is on Sunday, April 27, 2014. It is the Kemah Olympic Triathlon (1500M Swim, 25 mile bike, 6.2 mile run) where he will jump off a boat and swim to shore. This will be his 3rd year to do the race.
We are thankful for all the people who pledged a dollar amount per mile and hope you will consider donating as well.
If you would like to do a race in our honor and ask your friends and family to sponsor you, please visit our Reason2Race page at http://www.reason2race.com/join/hannahshope/ then simply email the name of your local race or event and we will add it to the calendar. Then you will create your team page and then let everyone know that you are racing for Hannah's Hope Fund. Whether your goal race is your 1st 5K or an Ironman, by letting your family and friends know that you have chosen a goal, they will help you be accountable in your training. You'll have lots of encouragement since everyone will know about your goal and you'll be able to help a great cause as well.
Donation Goal Distance Pledge $35.15 $.50/mile $70.30 $1/mile $140.60 $2/mile $351.50 $5/mile $703.00 $10/mile $3,515.00 $50/mile $7,030.00 $100/mile
While my parents have always felt that God had something really special in mind for me, they never imagined it would be to help find a cure for a serious disease. Of course, I remind them that God has something special in mind for everyone.
This website will help explain my disease. http://www.hannahshopefund.org/
Thank you for your prayers as I begin what I believe will be a Triumph over this serious disease.
Jared's road to a 1/2 Ironman Distance at Age 12
How does a nearly 13-year-old end up doing a half-ironman? The drive comes from Jared himself.
We have a rule that we do not allow any form of electronics in our house during the school week (unless it is needed for a school assignment). Because of this, our kids have always played outside and used their imagination. We can't say if it was his love for being outdoors or the fact that he is fairly reserved child, but when he was introduced to the sport at the age of seven, it ignited a passion in him.
Since neither his father nor I were triathletes or even runners at the time his interest began, we had to research to see if it was feasible for someone his age to begin doing longer distances when the kids triathlons were no longer challenging for him. Additionally, we received full approval of his doctors who closely monitor his training. I know there has been a great deal of concern about what this will do to his growing body. The research we found proves that this will not harm him. The excerpt from the below article helps explain our feelings:
Should Kids Run Long?
Can too many miles ruin young runners?
By Jonathan Beverly
Published June 26, 2011
"It's basically an urban legend," says Cathy Fieseler, M.D., practicing sports physician on the board of directors of the American Medical Athletic Association. While you won't find controlled studies on this, as you can't put a group at health risk for science, Fieseler maintains, "You'll find no data that kids will tear up ligaments, destroy cartilage or damage growth plates with high mileage. You don't need to put a top limit on it. "William Roberts, M.D., medical advisor for the Twin Cities Marathon, has conducted several studies on young marathoners, a self-selected group of young high-mileage runners, and has come to the same conclusion. "Kids and mileage basically makes us nervous," Roberts says, "but from all I've found, there is no harm being done; they are not getting hurt. If it is their choice, keep doing it."
(to view the full article visit http://m.runnersworld.com/high-school-training/should-kids-run-long?page=single)
Jared started slowly with his participation in adult triathlons. He began on relay teams; his plan was to build up to racing alone by doing 2 races where he did just one leg of the race, then 2 races where he did 2 legs of the race. After three relay races, he altered his plan when he found out about a super sprint race. It was a perfect distance for him. He has continued to use a plan when "stepping up" to longer distance races. He was the biker on an Olympic relay team before attempting his 1st Olympic race on his own. He did 2 Olympic distances races in the 2012 season before doing a 1/2 Iron Aquabike at Oilman Texas last year. He did the Houston 1/2 Marathon, the MS 150 and 2 additional Olympics this year in preparation for this 1/2 Iron distance goal. He also did an Xterra Off-Road Tri this summer as well. The planning and execution skills he uses in training will hopefully help him become a more productive adult.
As far as his day-to-day training, most of his time is spent on non-weight bearing activities such as swimming and biking. He swims with Rice Aquatics year-round so the majority of his training is in the water. In the past, he attended weekly bricks with the Bicycle World Kids Club, but lately he has been training on his own. He was able to compete in Cross Country at school this year so for the first time he was able to actually practice running with kids his own age. Prior to that, the only running Jared did with other kids was in a local summer program put on by Coach Andy Stewart.
Jared's goal is simple. He wants to finish a 1/2 ironman distance race and he wants to raise awareness for GAN for his siblings.
He has no aspirations about setting any time records. He is perfectly fine walking part of the run and he plans on stopping at all of the water stops (he doesn't like eating while riding). As his parents, we want to make sure that he has fun and stays healthy. We emphasize nutrition and he knows what he needs to do to stay hydrated and energized for the race.
He LOVES this sport and would race every weekend if he could afford to do so. He volunteers at races in order to help pay his entry fees. He paid for 1/2 of his new mountain bike that he uses to commute to school with every day.
With most sports, you can just drop your child off at practice with the coach and then watch them compete. However, there were no triathlon teams available for kids who wanted to do adult races when Jared started. There were also no books I could read to help him figure out how to train. In our family, it is not the case of a parent "pushing" their child or trying to live through them. I remember watching him at his 1st adult triathlon and thinking "I could never do that".
He has been an inspiration to our whole family. Since he started this sport, the rest of his immediate family has completed at least one Triathlon. His little sister, Lexi, did her first open water kids tri just 2 months after she got off her training wheels at age 4. Lexi enjoys tris but is happy to just do a few kids triathlons a year. Justin also did a few kid's triathlons before it became so difficult for him to run. His dad, Dave, appeased him by doing a super sprint in April of 2012, but decided that he will be happy to bike with Jared, but will never do an open water swim again. I did my 1st super sprint tri on Mother's Day 2011 and I am now training to do my 1st Ironman distance as well. Since I did not know how to properly swim (I swam without putting my head in the water), it was necessary for me to join a women's tri training group and learn how to swim properly.
There was a story published a while ago that talked about how Tri training can really wreak havoc on families. In our family, it has done just the opposite. We get to spend time together while we train. How cool is it that my almost 13 yr old wants to hang out with his mom?
Ironically, Jared is not that fast nor does he have an intense competitive drive. My husband and I have tried to figure out why he loves this sport so much and wants to race whenever it's feasible since he doesn't care where he places. When his twin brother Justin was diagnosed with GAN and we asked him to come up with a name for his "campaign", he picked Justin's Triumph. It didn't even dawn on me until a few weeks later when a friend pointed out how fitting that was for our family since the word "Tri" is in Triumph. Jared's endurance and love for this sport is enabling us to reach out and make others aware of this fatal disease. Hopefully this increased awareness will bring in some big donations to help find a cure for this horrific disease. It's Jared's way of supporting his brother and sister.I love all three of my children. They each have very different needs right now and I do my best to encourage them to set goals and then help them figure out what tools they need to accomplish those dreams. I never would have expected that supporting Jared would lead us to the triathlete life, but I am glad it did.
KHOU (CBS) - October 5th, 2013
Furlough affects Bellaire Boy with Rare, Fatal Disease
Daily Mail UK - October 5th, 2013
Dozens of Americans with fatal diseases have potentially life-saving research trials put on hold by government shutdown
NewsFix (CW0 - October 8th, 2013
Gov. shutdown could mean life or death for 12-year-old Bellaire boy
KTRK (ABC) - October 14th, 2013
Twin steps up after brother's deadly diagnosis
Houston Press - October 8th, 2013
Government Shutdown Gets Personal For One Houston Kid
KTRK (ABC) - October 14th, 2013
Twin Steps Up After Brother's Deadly Diagnosis
Houston Chronicle - October 19th, 2013
Houston family faces deadly disease in 2 children
Southwest News - October 22nd, 2013Local Youth Hoping For Research Funding to Combat Rare Disease*Hard copy only
Swim Bike Mom - October 28th, 2013
A Swim Bike Kid's Race to Save His Siblings
Triathlete.com - October 29th, 201312- Year-Old To Race Half-Iron Triathlon
Houston Chronicle - October 31st, 2013
Boy's quest to aid brother sparks outpouring of aid
Bellaire Buzz - November 2013Helping Justin Clark
NewsFix (CW) - November 4th, 2013Bellaire boy completes triathlon for sick brother
The Villager - November 6th, 2013Clark, 12, completes half triathlonhttp://www.yourhoustonnews.com/woodlands/sports/clark-completes-triathlon/article_cec6e0ed-54b2-5521-8877-c72def864b02.html#.UnucV-lSaC4.twitter
West U Connections Magazine - January 2014Help Justin Triumph Over GAN
Bellaire Buzz Magazine - January 2014Buzz Pics - Racing and Hoping
Texas Runner and Triathlete Magazine - December 2013Justin's Triumph: The Journey Begins, but the Family has Already Won The Race
002 Houston Magazine - December 2013Justin's Triumph: A Cure Within Reach