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Foundation for Mitochondrial Medicine

Hope Flies Athlete Recalls Her Trip to the Boston Marathon

The story below is from Dara Steele-Belkin, a Hope Flies Athlete and member of Team Ellie!  Read the below story from Dara about the 2014 Boston Marathon.

The 2014 Boston Marathon was my fourth trip to Boston for the marathon. On the first two trips, the race had not gone the way I wanted it to, but I still loved it for its glory, it’s enthusiastic crowd, and above all, it’s celebration of the marathoner. On the third trip, the race went better than the first two, but the tragic aftermath left me wanting to return as soon as possible.

Unknown-1My fourth trip to Boston started out emotionally. Simply returning to the city that had seen such tragedy the year before was enough to choke me up. Walking down Boylston Street for the first time, passing the sites where the bombs went off, was overwhelming. I remember wondering out loud if it would get easier to pass those sites. It did, but that first time is hard to shake.

My first stop in Boston, after passing quickly by the glorious finish line, was the Expo to pick up my number. As always, the Expo was a crazy mess of people, all excited for the marathon. This Expo was different in that they thoroughly searched my bag as I entered, and there were lots of police and police dogs near the entrance. Once inside, I got my number—3474—my lowest number at Boston ever, bought some great souvenirs, and caught a glimpse of elite runners Kara Goucher, Lauren Fleischman and Ryan Hall signing autographs for the masses. I noticed quickly that many in the crowd were wearing beautiful, hand-knitted yellow and blue (Boston Athletic Association colors) scarves. Apparently, the “Old South” church next to the finish line was giving out tens of thousands of scarves, knitted all over the country, bearing blessings for the runners. It was amazing and touching to see this handmade love adorning so many. One of those scarves was the only souvenir from the weekend I didn’t manage to get.

On race day, I woke without the need for any of the three alarms I had set. I met David in the hotel lobby, and we grabbed a cab over the Charles River to MIT’s campus, where we were to meet our unofficial Boston transport busses. These unofficial “club” busses are great in that you get to ride in a more comfortable tour bus style bus, instead of the official BAA school busses. The ride out to Hopkinton felt incredibly long, and the whole time, I couldn’t help but think about the fact that I would have to run all the way back. About three quarters of the way there, the roads are closed except to busses headed to the start of the race. When I saw the state troopers blocking the road and escorting the busses into tiny Hopkinton, that’s when the excitement really hit me, and it all felt real.

Because of increased security this year, our busses parked in a different area, a bit further away from the actual Athlete’s Village, where all of the runners from the official school busses gather. In past years, we could pass in and out of the village easily, but this year, it was a bit of a trek from our busses to the Village. More surprisingly, to get into the village, you had to pass through extensive security—where they actually used a metal detecting wand to screen the runners entering the village from the “unofficial” buses. Wow. That, along with the spotters (or snipers) on the rooftops of the school, really surprised me.

Once inside the Village, things were crazier and more crowded than I’d ever seen before. There was barely enough room to walk across the football fields where the runners were waiting. While there, we observed a moment of silence to honor the bombing victims from 2013; the hush among 30,000 nervous runners penned into two football fields was breathtaking. No one made a sound, as many of us—myself included—wept a little for all that was lost last year.

After that, time passed quickly, and it soon became apparent that the procedures for making the half mile walk from the Athlete’s Village to the Start Line would also be different this year. Race officialls called the corrals in groups of three, moving us into an kind of holding pen, and then walking us down the road toward the start. In years past, you could simply leave the Village whenever you were ready and head toward your corral. This year, we were orderly, following directions, and as many around me remarked, quite somber. It was probably the heavy security presence and the many instructions that changed the mood, but our smiles returned as we approached the starting area. While walking down, I heard the gun for the elite women’s start, and my sense of urgency increased.

Once I walked up to Corral 4, I slipped in among the other runners, and made my final preparations to run. I pulled the memory chip out of the camera I had been carrying and handed the camera and my extra clothes to one of the many volunteers. In just a few moments, they announced the elite men, sang the national anthem, and the starting gun went off. Corral 4 walked briskly up to the start line after the gun, only beginning to run after crossing the actual yellow line.

As always, the race took off quickly, because of the excitement and the downhill start. During the first few miles, I chatted amiably with a Delta pilot from Cincinnati and a couple of other runners, while settling in to my pace—admittedly a little faster than I had intended. Security remained high in these early miles, with National Guard troops staring intently out into the wooded areas off to the sides, rather than watching runners on the course. The first water stop, at mile 2, approached quickly and it was too crowded for me to grab a cup. I could already feel the sun, and I quickly grew aware that this race was going to be a bit warmer than most marathoners prefer. I resolved to drink heartily at every water stop from that point forward and to allow myself to slack off my goal pace if the heat became too taxing.

Those first few miles seemed to take longer than I would have liked, and I knew I was probably working harder than I should that early in the race. I tried to tell myself to settle in and conserve some energy. Somewhere around mile eight or so, a friendly runner came up beside me and said hello. I turned to see my friend, Josh, an Atlanta runner I’ve seen on many early morning runs. It always amazes me when I see familiar faces in such a huge race. I don’t know how he managed to pick me out. We ran together for a little while, but I could tell his pace was more aggressive than mine. I let him go, and settled in to look forward to the fun that awaits in the Wellsley Scream Tunnel. Around mile ten, I got to a portion of the course where they were blasting “YMCA” out to the runners. I remember this same spot from last year, where I marveled that all of these fast runners around me started doing the letters as they ran. Last year, I abstained from making my own letters, determined to preserve my energy. This year, realizing that race conditions were already not the best and knowing that my race had already begun to show the ill effects of the heat, I joined in the fun, smiling and laughing incredulously as we moved our arms through the Y-M-C-A letters without breaking stride.

Soon after, I could feel the cool breezes that carry the screams of the Wellsley students as we approached the half-way mark. Just before the half way mark, which is in the town of Wellsley proper, I ran through the Wellsley Scream Tunnel, smiling big, laughing at the signs, watching the men around me grab kisses, and blowing some kisses of my own. That section is always one of the race highlights for me. The beautiful town of Wellsley comes up soon after, and its square is always filled with cheering crowds. The half-way point is well marked there, and I took a deep breath as I crossed the mats. I knew I should feel stronger at the half-way point if I had any hope of finishing strong. I decided not to worry about it too much, and set my thoughts to Mile 16, where the first hill, and my husband, Jeff, await.

The next three miles passed quickly, as I busied myself with thoughts of how I could manage to rapidly convey to Jeff that today wasn’t going to be a PR day, so he shouldn’t be expecting me at the finish as early as I hoped. I very soon found myself crossing the overpass, and trudging up the first Newtown’s famous four hills along the course. I felt strong on the first hills, and I was thrilled to see Laura and Bobby Green, and the Green parents all cheering wildly as I neared the top. Just at the crest of the hill, I spotted Jeff and gave him a big high five.   It all happened so quickly, I never did get to warn him that I was having a rough day. I even spotted my friend Betsy’s husband, Steve, cheering in the same area. It was a treat to spot so many familiar faces.

I proceeded to the second of the hills, and worked on repeating my new hill mantra of “not so bad,” as I went up the second hill. The second hill is deceptive, because it comes with a kind of aftershock of a hill just after you think you’ve reached the peak. I remembered this from Sunday’s course tour, so I proceeded through the bumps patiently. After that, I believe there might be a downhill mile before the final two hills. I rode the wave of relief from hill two so well that I somehow failed to notice the climb up hill number three. Suddenly I found myself staring at the sign for the HeartBreak Hill Running Company, which sits at the very bottom of Heartbreak Hill—the fourth and final of the Newton Hills. I settled into the climb, slowwing as I reached the crest. Feeling like my legs were barely moving, I looked up and someone shouted, “hey—and American won the race! An American won today!” I could barely process it. My mind left the deep ache in my quads for a brief moment as I wondered to myself, “Meb or Ryan” and mused that neither seemed likely to win. I wondered if maybe hometown heroine Shalane Flanagan had won the women’s race. With curiosity and elation in my mind, I powered myself over the crest of the hill, and breathed deeply to catch my breath, knowing that the rest of the race was truly (though not entirely, downhill).

After Heartbreak Hill, I focused on breaking the distance to the Finish Line into manageable pieces. Just five more miles I told myself. As I approached Boston College, the crowd grew rowdy and loud on the right, while on my left I watched incredulously as a runner halted, chugged a beer, and (I presume) continued on. Feeling equally thirsty, but not so brave (or perhaps crazy?), I mused that the beer drinker must have been a Boston College alum.

Feeling a charge from the crowd, I turned my focus back on the finish and repeated to myself over and over, “I will finish this race; I WILL finish this race; I will FINISH this race!” Despite my determination, I could feel my body slowing, the salt caking on my face from dried sweat, and the growing craving for deep gulps of cold water, which I could not possibly manage as I passed through the water stations. I was still a long way from the finish, but I was ready for my race to be over. Quickly losing track of the miles from mental and physical fatigue, I started to believe that I was in the final 5K, only to be hugely disappointed when the next mile marker turned out to be for mile 23, and not for mile 24, as I had thought.

Shrugging off that let down as best I could, mile 24 carried the treat of my good friend Adrienne cheering me on–and again I was amazed that she could pick me out of the crowd of thousands of runners and that I could spot her on the sidelines. I cannot express enough how grateful I was for the support of so many friends that marathon Monday. I ran on, knowing my pace had slowed, not fully able to calculate my likely finish time, and yet not beating myself up too much for it, since I knew the heat of the day had taken its toll.

Dara Steele-Belkin crossing the finish line at the Boston Marathon. The course enters into the city of Boston around mile 25 (I think), and at that point, I really started to feel the finish approaching. Racing past Kenmore Square, I ran up the overpass, passing Fenway on my right, and neared the beautiful neighborhood of Back Bay, where the race ends. I had long since stopped looking at my watch for time or pace, feeling that whatever I was running was the best I could do. I knew it wasn’t as fast as I had wanted to go, but I was also pleased with myself for moving so well up to that point, given the warm temperatures.

I soon found myself on Commonwealth Avenue, passing under Massachusetts Avenue, and traveling up the short rise into the heart of Back Bay. Finally, I had arrived at the iconic and log awaited, “right on Hereford” followed shortly (though not shortly enough) with a “left on Boylston” and my first glimpse of the Finish Line. The short uphill stretch of Hereford passed relatively quickly, and I took a deep breath as I made the left on to Boylston.

I smiled a bit and inhaled deeply as I looked down the long stretch of Boylston toward the finish. As beautiful a sight as it was, it was still a long way away. I struggled to keep my pace up, with my eyes on the finish line, willing it to draw closer to me a bit more quickly. After that long, but glorious eternity of running down Boylston, I let my arms fall as I stepped across the finish line. I crossed the line a couple of minutes over my top goal, but solidly on my “back-up goal” for the day, at 3:02, within a few seconds of last year’s time. I was pleased with my race, and relieved to be done.

It was a safe and successful day for me and for the city of Boston, and the American win, by Meb (as I later learned), was the very redemption that Boston, and all of the marathoners, needed after the horror of last year’s finish. The Finish Line was once again ours. I can’t wait to cross it again next year.

Dara is a member of Team Ellie and has participated in the Boston Marathon and other events to help raise awareness and funds for mitochondrial disease research.  Click here to learn more about Team Ellie and DONATE!

 

 

 

 

Lisa Chatigny runs New Orleans Marathon

Lisa Chatigny 1

Lisa Chatigny running in the rain.

This past Sunday, Lisa Chatigny ran the New Orleans Rock ‘n Roll marathon as a Hope Flies Athlete, all in the name of a close friend impacted by mitochondrial disease.

This was her second full marathon, but this time it wasn’t all about Lisa and her performance.

In the past, Lisa trained for the Nashville marathon and set an aggressive goal. But when Lisa crossed the finish line an hour after her anticipated time, she was heartbroken. Lisa then decided that she didn’t want to set a time goal for the New Orleans marathon, but set a fundraising goal. Lisa told herself that even if she fell short on race day, she knows that she would achieve her fundraising goal.

Lisa and friends ready to run.

Lisa, her husband and neighborhood friends who came to run.

This time, it meant so much to Lisa knowing, from the beginning, that it was not all about herself and her performance. As a Hope Flies Athlete, Lisa raised over $1,400.

“The fundraising for the Foundation for Mitochondrial Medicine went so well, and I’m so fortunate to have such generous and supportive friends and family,” Lisa said.

Lisa and her husband traveled with three other couples who all ran the marathon and half-marathon. The morning of the race was drizzly and warm. The course provided a change of scenery, including a stint through a very foggy French Quarter. Since it was a rock n’ roll-themed marathon, the runners were treated to all kinds of music from bagpipes to gospel choirs.

Lisa Chatigny

Lisa after the marathon.

The second half of the course was harder for Lisa, since there were few spectators to lend support and there were some “hills” as they crossed canals. Although Lisa did not have a specific time goal in mind, she did want a time with a “4” in the front. Lisa’s legs started to give out by mile 18; she dragged on as best she could. But Lisa’s husband, who finished the half marathon just a few hours before, came and got Lisa at mile 24, and ran with her until just before the finish. Her finish time was 4:58:42. Lisa couldn’t have asked for a better marathon experience!

The Foundation for Mitochondrial Medicine’s Hope Flies Athlete program allows individuals to participate in any athletic endeavor. It is a fantastic way to raise money for mitochondrial research in honor of someone you know who is suffering or a life that has been list to a mitochondrial disease. You can still support Lisa’s fundraising efforts and become a Hope Flies Athlete today!

Katie Parsons, a 6th Grader Working to Fund the Cures for Mitochondrial Disease!

Meet Katie Parsons, an engaging 11-year-old girl from Marietta, Ga.  Katie is an outgoing, happy 6th-grader that loves riding and jumping horses.  She has also recently started as a percussionist. Katie is also very excited to earn her babysitter and CPR certificate because she loves taking care of others, especially little kids. In many regards, Katie is just like her classmates, except that she has mitochondrial disease.

Katie was born healthy at 7 pounds 11 ounces. Her health was fine her first few weeks, but then she started having issues with reflux. At 6 weeks, she saw her first specialist – a gastroenterologist.  As the reflux worsened she began to not eat and she developed torticollis and plagiocephaly. Even at this early age, she knew that eating caused her pain, so she had to have an NG tube to help her from losing further weight. This was just the beginning of many ER visits and hospitalizations.

It was not until an ER visit where her blood sugar was in the 30s that Katie’s parents began to get the feeling that something was very wrong. Katie began crying from excruciating pains in her legs and began falling. The family began a journey with specialists included endocrinologists, geneticists, allergists and nutritionists.  Katie was hospitalized many times due to illness, blood sugar fluctuations and respiratory issues. Her parents were scared and felt helpless knowing something was wrong, yet they still had not received a concrete diagnosis.

Katie sold 139 snow cones to raise money for FMM and mitochondrial disease research.

Katie sold 139 snow cones to raise money for FMM and mitochondrial disease research.

Katie’s parents took her to Dr. John Sladky, a neurologist who conducted an EMG and confirmed Katie’s myopathy. Dr. Sladky was the first specialist to mention mitochondrial disease. From that appointment, Katie went to Dr. John Shoffner, a leading mitochondrial expert and researcher.  A muscle biopsy with Dr. Shoffner confirmed Katie’s mitochondrial disease, Complex 1 and 3. After starting a regimen of medications, her symptoms started to improve.

Through the next several years, Katie’s condition has constantly evolved through highs and lows.  Additional medications help make dramatic improvements, and then other health issues develop, such as cerebral folate deficiency, asthma, lactic acidosis and migraines. Through it all, Katie has stayed strong and positive.  Even though from the outside she looks like nothing can be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to run.

Katie is now a young philanthropist and raises funds for the Foundation for Mitochondrial Medicine.  She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation.  She also recently held a snow cone sale at her school to raise additional money.  Katie sold 139 sno cones for FMM!

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Atlanta Braves game and represented the Foundation for Mitochondrial Medicine at the Foundation’s first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren.

Earlier this fall, Katie was recognized 11 Alive’s Random Acts of Kindness and honored as FMM’s first Firefly Friend.

Katie is a shining example that one person can make a difference, no matter their age. The Foundation can’t wait to see what the future holds for this creative and enthusiastic girl!

Ask Me Why – Theresa Gaejtens

As I watched my 14-year-old son, Remi, run a 5K in the fall of 2011, I thought to myself, “Isn’t it incredible – I had a daughter who had no energy, and I have a son with an overabundance of energy?”  It was at that race that I came up with the idea of having a 5K to help raise awareness of, and funds to find a cure for, mitochondrial disease.

Miles in Memory of Michaela

It’s been almost 10 years since I lost my daughter, Michaela, to mitochondrial disease. Since then, our family has taken part in walks for mito at different times.  However, I always thought mitochondrial disease had to be related to other diseases.  I found out that the Foundation for Mitochondrial Medicine believes that, too.  So we jumped in, feet first, to organize our event. We checked out numerous 5K events, a bunch of venues, and even traveled to Connecticut to check out the Walk for Abby in 2012.  Many months later, on April 20, 2013, our inaugural Hope Flies Miles in Memory of Michaela happened!!

It was a crazy rainy day, to start.  We set up in the rain for 2 hours.  Then the rain stopped, and people came.  They came to support our family, maybe to learn more about mitochondrial disease, and to remember the incredible Michaela Rae the Brave.  We had more than 30 runners, and more than 60 walkers.  Our raffle was also a highlight of the day, along with uplifting music.

We shared information about mitochondrial dysfunction and its relationship to more well-known diseases.  My husband, Ray, and I are thankful to everyone who helped us, especially our family, through all our planning sessions.  We are thankful to everyone who helped us set up in the rain.  I had no idea the details the event would involve, but they were well worth it – it was an uplifting day full of Hope!  We’ve learned a lot, and want to be bigger and better next year!  Look for our 2014 date soon!

Connect with Hope Flies Miles in Memory of Michaela on Facebook!

2013 Hope Flies Home Run Challenge Raises $8,000

ATLANTA, June 20, 2013 – The Georgia Tech Yellow Jackets baseball team again partnered with the Foundation for Mitochondrial Medicine for the annual Hope Flies Home Run Challenge, inspired by former Jackets baseball team member Colby Wren, and raised $8,000 dollars during the 2013 baseball season. For every home run the Jackets hit during the 2013 season, supporters made donations from $1 up to $100 or more per home run with all proceeds benefitting the Foundation. The Jackets hit 58 home runs during their season! Interested individuals or corporations can still contribute at http://bit.ly/HomeRunChallenge.

Colby Wren, a Georgia Tech junior, played with the Jackets his freshman and sophomore seasons. His twin brother Kyle played center field for the Jackets this season. Colby was diagnosed with mitochondrial disease in his early teens and has to manage the disease’s affects on his health every day. As an ambassador for the Foundation for Mitochondrial Medicine, he is eager to raise awareness of the disease, so that the increasingly numbers of diagnosed individuals — 1 in 2,500 and growing — can get treatments. Currently, there are no treatments available.

“Colby’s passion to educate others about mitochondrial disease and the importance of finding a cure can translate into significant funds raised,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine.

Mitochondrial disease is an energy production problem that primarily affects the muscular and neurological systems. Mitochondrial are the “power plants” that produce the body’s essential energy and when they don’t function properly, the body can have a “power failure.” There is a graduation of affects – ranging anywhere from a “brown out” to a fatal “black out” – and no two people diagnosed with mitochondrial disease have the exact same symptoms. Mitochondrial dysfunction is at the crux of many common diseases including Autism, Alzheimer’s, Parkinson’s, ALS, and chronic fatigue, and research and treatments for mitochondrial disease could help in treatments for these other diseases.

“I’m happy that Jackets baseball partnered again with this important fundraiser,” said Colby Wren. “The team is an extended family to me and it’s great to know they support the fight against mitochondrial disease.”

Blayne Shelton – Hope Flies Athlete and Audrey’s Dad!

This past December, Blayne Shelton helped FMM launch our Hope Flies Athlete program by running the Jacksonville Bank Marathon in honor of his daughter, Audrey.  Blayne was running to help raise awareness for Mitochondrial Disease and to help fund cures!  Click here to reach the press release about the marathon.

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Audrey’s Story
My wife, Jonna, gave birth to Audrey in August of 2007.  Older sister Claire was born 2 years before so we could tell that something was different.  Audrey had difficulties with feeding due to reflux which led to weight loss and an overall failure to thrive.  We consulted with several medical professionals throughout the course of the following 3 years before Audrey was diagnosed with mitochondrial disease by Dr. John Shoffner at Medical Neurogenetics.

People with mitochondrial disease have difficulty producing energy.  Most cells in the human body contain mitochondria which act as the power plant for that cell.  The cells of patients with mitochondrial disease are operating at less than full power.  The condition affects people at varying degrees with some children being highly functioning and others operating at very low levels.  In extreme cases the disease can lead to death.  Audrey is primarily affected by poor muscle coordination which degrades her fine and gross motor skills.  She can walk but has a limited ability to speak.  She clearly understands more than she can express which can be frustrating to her.  One area that is not affected is her personality.  Audrey is very gregarious and people are naturally drawn to her.  Audrey has made progress by working with therapists (occupational, physical and speech) as well as her dedicated teachers at Coralwood Elementary . She has come a long way but we’d like to find a cure or at least more treatments.  That is precisely what the Foundation for Mitochondrial Medicine is working toward.  Given that mitochondrial disease has a link to Autism and Parkinson’s Disease, any progress made by the FMM could benefit people with those conditions as well.

Happy Father’s Day to all of the dads out there helping to raise awareness, fuel connections and fund cures!  

We encourage you to post comments and tell us about your father and why they mean so much to you on this special day.

Want to honor someone who is helping us fight Mitochondrial Diseases?  Click here to make a donation and tell us their story!

 

Planning to Run the Peachtree Road Race in Atlanta?

This year make your accomplishment something more by becoming a Hope Flies Athlete! In addition to helping raise funds and awareness for mitochondrial disease, you’ll have the opportunity to participate in Group Training Runs with elite athletes from the Atlanta Women’s Marathon League, including the winner of the 2013 Publix Marathon, Jill Horst. Group runs will take place from local area Fleet Feet stores on the four Saturdays before the Peachtree. Fleet Feet is also generously giving Hope Flies Athletes a discount on training run days.  Get all of the details and sign up here!

Why become a Hope Flies Athlete:

  • Receive a cool Hope Flies Athlete T-shirt that can be personalized with the name of the person you are running to honor
  • Gain the opportunity to participate in group training runs with elite athletes from the Atlanta Women’s Marathon League, including Jill Horst, the winner of the 2013 Atlanta Publix Marathon. Group runs will take place from local area Fleet Feet stores on the four Saturdays before the Peachtree.
  • Receive 15 % Discount at Fleet Feet stores On the day of training runs
  • Enjoy the personal satisfaction of giving back.
  • Become a catalyst for collective impact and connect with many relateddiseases, Autism, Parkinson’s, Alzheimer’s, Diabetes and more

How to get started!

  • Create an electronic Personal Fundraising Page at bit.ly/HopeFliesAthlete to raise $500 minimum
  • Email your friends and connect with FMM via social media
  • Join a group run to learn success tips from elite runners
  • Wear your Hope Flies Athlete t-shirt in the Peachtree Road Race on July 4, 2013

Please Contact Us Today!  Share your name, address, email and phone to sign up today: athleteprogram@mitochondrialdiseases.com

Click here to view flyer about Peachtree Road Race group runs and details!

The Belnap Family and the Phoenix Marathon

Hope Flies Athletes

Hope Flies Athlete Logo

Bringing people together from different age groups, communities, and backgrounds in memory or honor of a patient with mitochondrial disease is the driving force behind the Hope Flies Athlete program.

At the Foundation for Mitochondrial Medicine, we encourage and support family members, friends, and the community members to run or walk a 5K, 10K, or any athletic endeavor in memory or honor of a patient with mitochondrial disease.

Getting Involved as a Hope Flies Athlete

This is a very easy program to set up and can be implemented in just a few short weeks.

Please contact us at athleteprogram@mitochondrialdiseases.brentjohns.com to get started!

We swim, bike, and run because they can’t.

There is something special about racing for someone else.  There is something special about racing for a cause that makes the race more meaningful.  It’s time to change our silent motto to a loud scream that can be heard across the country.  It’s time for me to lace up my trail running shoes again.  It’s time for me to clip into my mountain or road bike and race because they can’t.  Thank you for all who have supported Team Belnap:  We swim, bike, and run because they can’t.
–Newell Belnap

Team Belnap

If you don’t know anything about the Belnap family and there fight with mitochondrial disease, you can learn more about them at A day in the life of a dad and his children with mitochondrial disease.

In 2008, Seth, the youngest Belnap developed unusal neurological symptoms, which after many hospital and doctor visits later, was diagnosed with Leigh’s Syndrome, a form of mitochondrial disease.  Shortly after Seth was diagnosed, the oldest daughter was also confirmed to have mitochondrial disease.  Then, in the spring of 2012, Spencer, the oldest Belnap son was also diagnosed with mitochondrial disease.

Spencer had participated in many events and was very proud to do so for his siblings that couldn’t.  Spencer’s diagnosis meant that he wouldn’t be able to participate either.  The Belnap parents have pledged to their children that they will do whatever it takes to help find better treatments and eventually a cure.

Phoenix Marathon

The Phoenix Marathon took place on March 1st in Tempe, Arizona.  Team Belnap participated in the race, along with others to help raise awareness and funds for mitochondrial disease treatments.

Thank you for everyone who supported our team with running, volunteering at booth, sharing our blog, or donating financially to our cause and the White Mountain Independent Newspaper. Was a huge success and we have raised over $1800.00 for mitochondrial disease research! Hope Flies!

Check out some of the pictures from the Phoenix Marathon.

 

 

 

 

 

Show Low Family Creates Team To Participate in Phoenix Marathon To Raise $ for Mitochondrial Disease Research

ATLANTA, February 22, 2013 – The Belnap family of Show Low, Az., will participate in the March 2 Phoenix Marathon as Hope Flies Athletes – a fundraising program to honor those diagnosed with mitochondrial disease and raise research funds for the Foundation on Mitochondrial Medicine.  The Belnaps have created “Team Belnap” and currently 15 people, including 11 runners, are on the team.  Marathon runners include local AZ runners Becky Belnap, Heidi Garner, Amy Clark, Rena Brady and Annette Mangan, joined by elite marathon competitor Jill Horst of Atlanta; half marathon runners include AZ residents Josh and Whitney McAdams (Josh is a former Olympian); the 10K runner is elite 10K competitor Mackenzie Howe of Atlanta and the Kids Race runners are Jake Garner and Sierra Belnap.

Everyone on Team Belnap is running in honor of the three Belnap children that have been diagnosed with mitochondrial disease:  Seth, age 6; Spencer, age 15 and Sydney, age 18.  The Belnap’s 10-year-old daughter Sierra does not have mitochondrial disease and is running the Kids Race.  Six-year-old Jake Garner is running the Kids Race in honor of his friend Seth Belnap.  The Team Belnap fundraising page is http://bit.ly/HopeAthlete under the team directory tab.

Through their participation as Hope Flies Athletes, Team Belnap has already surpassed their fundraising goal of $1,000 for the Foundation for Mitochondrial Medicine.  All Team Belnap members will wear shirts that say “My Hope Flies for ____” and the Foundation will have an information and donation tent in the Finish Area of the race.

“Mitochondrial disease can strike at any age and currently has no cure,” said Newell Belnap, father to Seth, Spencer, Sydney and Sierra. “My wife Becky and I have pledged to our children that we will do whatever it takes to help find better treatments and eventually a cure, and the Hope Flies Athlete program is just one step towards that goal.”

“Children and teens with mitochondrial disease may look and act like any other kids, but they experiences daily battles with exhaustion, muscle weakness, and the inability to focus in school,” said Foundation executive directly Laura Stanley. “We wanted to give runners, walkers, cyclists and other athletes a way to gain further inspiration for their events and to help raise awareness about mitochondrial disease.  Everyone at any level can help.”

Athletes participating in the Hope Flies Athlete program can compete in any type of athletic event including runs, triathlons, walks, swims and more and dedicate their participation in honor of the Foundation or to a particular person with mitochondrial disease and raise funds for the Foundation.

FMM encourages athletes of every age, shape, size and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial disease. To learn more visit http://bit.ly/HopeAthlete. The Foundation for Mitochondrial Medicine’s mission is to support the development of the most promising research and treatments of the many forms of mitochondrial disease. Mitochondrial disease is an energy production problem that occurs when the cell’s mitochondria, or “power plants,” don’t function properly and create an energy crisis. The disease primarily affects brain, heart and muscle cells in varying degrees.  More than 1 in 2,500 are affected by mitochondrial disease, and the treatments and cures for mitochondrial disease can impact cures for related diseases like Autism, Alzheimer’s, Parkinson’s, and muscular dystrophy among others. For more information on the Foundation and information about funding of specific research projects, please visit www.mitochondrialdiseases.org.

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Are you an Athlete and want to be a Hope Flies Athlete? Form your team today and learn more about our first Hope Flies Athlete!

Hope Flies Athlete LogoWhether you’re a runner, a cyclist, a bowler or more – any type of athlete can participate on behalf of the Foundation for Mitochondrial Medicine to raise funds and awareness.

Click here to learn more about FMM’s Hope Flies Athlete Program.

Check out this article on our first Hope Flies Athlete, Blayne Shleton, and his great fundraising efforts around the Jacksonville Bank Marathon.

 

 

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