Born with a very rare genetic condition called hereditary spastic paraplegia (HSP) that keeps her from walking across a room unaided, six-time U.S. National Champion para-equestrian rider Rebecca Hart has set her sights on winning Gold at the 2014 AllTech FEI World Equestrian Games 2014 (WEG) in Normandy in August.
After winning her sixth national championship on June 6, placing fourth and just behind the Bronze at the Para-Olympics in 2008 and 2012, Hart is determined to make it to the podium this time around. Hart recently returned from Denmark where she purchased what she believes is just the right mare for the job, Romani, from the prestigious Straight Horse Farm.
“What is special about this horse is she combines the athleticism and skill of a high- performance dressage horse with a very giving and adaptable intelligence and temperament,” says Hart. “It took a long time to find her, but with a horse like Romani, gold is definitely in reach.”
Riders like Hart, whose legs are less responsive and nimble than more able-bodied riders, require an animal with just the right mix of attitude and performance. If the horse is too responsive, then Hart will have trouble controlling the animal. If the horse is to slow, then Hart will not be able to complete the complex and precision steps Dressage demands.
This requires para-equestrian riders to become far more proficient than their able-bodied counterparts.
Backed by sponsors Starbucks, Margaret Duprey of Cherry Knoll Farm, William and Sandy Kimmel, and many friends and family, Hart is also riding in support of the Spastic Paraplegia Foundation and its efforts to find a cure for HSP and its ultra-rare cousin, primary lateral sclerosis (PLS). Both HSP and PLS are related to other serious central nervous systems disorders like ALS and Huntington’s disease.
This year’s WEG is special because it is the only international competition where para-athletes compete on the same stage as their able-bodied counterparts. Usually, para-equestrian competitions are held in the same venues but on separate dates thus lowering the profile of the riders.
“To be able to be there, we can show we are high-powered riders and equally qualified to compete on any stage in the world,” says Hart. “Yes, we have disabilities, but our abilities parallel those of able-bodied competitors. Having our events going off at the same time, being side by side, we can effectively demonstrate this.”
Rio or Bust
While the WEGs are perhaps more prestigious than the Olympics, Hart has her sights set squarely on winning Gold in Rio in 2016. If she is successful, she will significantly raise the profile of American para-equestrian riders everywhere and give the sport the big boost it needs to survive and flourish in the U.S.
“That is our ultimate goal,” says Hart. “I’ve been close to the podium a couple of times, and it would be as much their win as it would be my own. It would be amazing to stand on the podium and see our flag go up.”
Hart rides out of Blue Hill Farms in Unionville, PA. and, like all top-level athletes, trains at least six days a week — in between fund raising events and a full time job as a financial analyst as well as another part time job at Starbucks. She will be heading to West Palm Beach FL. in March to compete in the Certified Para-Equestrian Dressage International (CPEDI) qualifier and then on to Europe for two more qualifiers in Belgium and France.
Six-Time U.S. Para-Equestrian Champion Rebecca Hart on Schroeters Romani competing at the CPEDI3* in Moorsele, Belgium, April 2014
About HSP and PLS
Hereditary Spastic Paraplegia (HSP) is a group of rare, inherited neurological disorders. Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. Researchers estimate that some 30 different types of HSP exist. The HSP incidence rate in the United States is 20,000 people. Worldwide it is estimated there are 180,000 affected individuals of all ages, genders and nationalities.
Research is progressing rapidly, and it is hoped that advances in the understanding of HSP will lead to treatments for other related disorders as well such Charcot Marie Tooth – Type II, neuropathies, ataxias, MS, Parkinson’s, Huntington’s, ALS, PLS, and a host of other rare and widely feared conditions.
Primary Lateral Sclerosis (PLS) is a group of ultra-rare neurological disorders caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which results in increasing spasticity and weakness of voluntary muscles. It is often referred to as a benign variant of Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease. The primary difference between the ALS and PLS is, in PLS, the spinal motor neurons, or lower motor neurons (LMNs), stay intact. Thus, there is no muscle wasting (amyotrophy), which is the symptom that ultimately causes fatal complications in ALS.
About United States Para Equestrian Association
The United States Para-Equestrian Association (USPEA) includes every equestrian discipline that is practiced by athletes with physical disabilities. Each rider or driver competes under the eighth discipline, The Para-Equestrian discipline, of the United States Equestrian Federation. The USPEA is a network of riders, judges, national federation board members, and equestrian enthusiasts. The association gives athletes the ability to get involved and expand their knowledge and experience in the sport of Para-Equestrian.
The Spastic Paraplegia Foundation, Inc. (SPF) is a national, not-for-profit, voluntary organization incorporated in February, 2002. It is the only organization in the Americas dedicated to Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP). SPF is committed to providing information about these disorders, creating opportunities for mutual support and sharing, and discovering the cures for HSP and PLS by funding research. These closely related upper motor neuron disorders affect some 24,000 children and adults across the United States and Canada. The SPF is dedicated to finding the cures for these conditions and providing information and support services.
Giving Tuesday was a great start on our year end goal. So far we have raised over $37,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors - CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know we can get to our goal if we all do our very best. We ask you to please join in our efforts by making a donation.