SPECIAL WORLD RECORD FRIDAY JULY 26th
James Roumeliotis will attempt to break the world record for most consecutive bounces on a pogo stick all to benefit the Scleroderma Research Foundation. The filming will be held at Washington Square Park in New York City.
The world record allows zero breaks; this is non-stop, constant bouncing. Please help our efforts by donating today! All donations go directly to the Scleroderma Research Foundation in an effort to find a cure.
What is Scleroderma?
Scleroderma is a connective tissue disease that involves changes in the skin, blood vessels, muscles and internal organs. It is chronic, complex and debilitating—much more than ‘hard skin,’ as its name implies. The disease initiates as an autoimmune attack, and after a variable period, the disease often explodes into either devastating fibrosis or crippling vascular damage. From there the disease can progress to affect the body’s internal organs, sometimes with life-threatening consequences. Depending on the subtype of illness, scleroderma can damage the lungs or kidneys. In most patients, the gastrointestinal tract is affected and, for some, it can severely impact the ability to consume solid food. Peripheral vascular damage due to scleroderma is nearly universal and can result in loss of fingers, toes and entire limbs. In other cases, the joints and muscles are affected, resulting in a loss of mobility and like other autoimmune diseases, chronic and dominating fatigue is common.
Scleroderma most often strikes between the ages of 20 and 50 with women far more likely to be afflicted than men by a ratio of approximately 4:1. Still, scleroderma can affect anyone: men, children at any age and across all ethnic groups. It is an orphan disease with many sources estimating approximately 100,000 diagnosed patients in the US and others suggesting the possibility of more than triple this number currently undiagnosed or misdiagnosed with some form of scleroderma.
Lung disease, the most common lethal complication, affects roughly 20% of patients, with those affected predominately hit by fibrosis called interstitial lung disease (ILD). In other patients, the lungs are impacted by pulmonary arterial hypertension (PAH) which is a result of high blood pressure in the arteries to the lungs. PAH is the most lethal complication for scleroderma patients with a three-year survival rate of only 50-70%.
Although the PAH numbers are alarming, research has made significant progress as compared to just five years ago. The scleroderma community is now in the midst of a sea change in terms of awareness and correspondingly, in therapeutic development. As one measure of this change, there are more than 50 clinical trials enrolling scleroderma patients in the US today.
There is still much work to be done. The fact remains there is no way to prevent scleroderma, no universally successful therapies and there is no cure. Nevertheless, it is becoming clearer every day that new research paths will lead to highly effective treatments.
There are two major types of Scleroderma: Localized and Systemic; each with their own subcategories. More detailed information can be found on the Scleroderma Research Foundation’s website at www.sclerodermaresearch.org
As of today, there is no cure for scleroderma. Even worse, there are no universally effective treatments and the causes of the disease are still unknown. Researchers have determined that, like many autoimmune disorders, scleroderma can run in the family; however, the gene has yet to be identified and multiple direct family members are rarely affected. The disease is not contagious or directly hereditary.
At Bounce to a Cure, we help to raise money and support for the Scleroderma Research Foundation, America’s leading nonprofit investor in medical research to find improved therapies and a cure for this life-threatening disease.
If you or someone you know has been diagnosed with scleroderma, direct them toward the Scleroderma Research Foundation so they can help to provide the necessary resources.
Contact us if you wish to help with fundraisers, events, and ideas to help raise money and awareness for Scleroderma