WHY WE ARE RUNNING!
Mónika is our hero. For the past 10 years she has been fighting a rare liver disease called PSC, or Primary Sclerosing Cholangitis. Over the past decade, we have witnessed her fight this disease with all her might, with our brother Tito alongside her. We've seen them go from initial diagnosis, to learning all they could about PSC, to giving birth to their miracle boy Elio against all odds, to waiting for a donor liver as Mónika's own failed, to getting a new liver, to working slowly towards recovery, to recently getting the hard news that the PSC has returned.
Anyone in her situation would be well-deserved to focus only on her health and family. But Mónika has done much more. She started a podcast about mothers with PSC, has spent countless hours educating her community about this rare and confounding disease, and she continues to fight hard for her recovery. Mónika has set the example for all of us.
Since her transplant, Mónika has been running as a way of building and preserving her strength. And in December 2019, she will run her first marathon, the Honolulu Marathon, because she's amazing like that. Because her tenacity is infectious, her sister-in-law's Cecilia and Laura, and brother-in-law Gabe are all running solidarity races with her: Cecilia's running a 10K around Central Park on October 5, and Laura and Gabe are running the Chicago Marathon on October 13.
We are joining together to fundraise for PSC Partners Seeking a Cure, the US's leading organization supporting live-saving research and educating people about this disease.
Please join us in celebrating Mónika by giving to others, just as she so often does. Make a donation, in any amount, to help us outrun this disease for good!
WHAT IS PSC?
Primary Sclerosing Cholangitis (PSC) is a chronic bile duct disease that damages the bile ducts inside and outside the liver. Bile ducts carry bile from the liver to the intestines. With PSC, bile ducts are inflamed, and the inflammation leads to scarring and narrowing of the affected ducts. Eventually, blockages may occur. As the scarring blocks more and more ducts, bile becomes trapped in the liver. This damages the liver and can result in cirrhosis of the liver and liver failure. Patients may eventually require a liver transplant.
PSC is a rare disease that predominantly affects 30-40 year-old men. However, PSC also occurs in children of any age, women, and the elderly. PSC affects about twice as many men as women. It is estimated that there are over 30,000 PSC patients in the United States.
WHAT CAUSES PSC?
Although no one knows the causes of PSC, a great deal of research is underway to understand the disease better. We know that PSC may have genetic, autoimmune, and environmental origins. It is important to remember that no two PSC patients are alike and that PSC isn’t contagious. It can’t be transmitted through kissing, sexual activity, touching, or blood transfusion. There may be a genetic predisposition to PSC, but most children of PSCers are healthy and unaffected.
There are medications and procedures that can help relieve some aspects of the disease and symptoms, but the only definitive treatment is a liver transplant. Still, many PSCers live long and productive lives with the disease, and they may never need a transplant. It is important to stress that transplant is a treatment, not a cure. Some studies show recurrence of PSC happens in about 20% of post-transplant patients.
WHY SUPPORT PSC PARTNERS?
Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization dedicated to providing education and support to primary sclerosing cholangitis (PSC) patients, families and caregivers and to raising funds to research causes, treatments and cures for this rare disease. Their programs give support to patients, caregivers, families and friends, educate patients and the medical community about PSC and encourage ground-breaking research in the search for a cure. Please visit http://pscpartners.org to learn more.