Who is Amy?: The Fight against the rare Blood Disease Amyloidosis.

Via on Aug 27, 2010

This September marks the 3rd  Who is amy? gala to benefit education at the University of Colorado Medical School and the Mayo Clinic’s research efforts to find a cure for amyloidosis—a rare blood disease in which amyloid proteins are abnormally deposited in organs and/or tissues which then interfere with normal body function and many times can be fatal.

Founded by three sisters, Becca Barry, Shelley Cooper and Sarah Cooper, Who is amy? is an organization that supports research efforts and raises awareness about the rare blood disease amyloidosis. Dealing with their father Mike Cooper’s diagnosis of amyloidosis and struggling with the horrifying fact that there was (and still is) no cure, the sisters selflessly founded the non-profit dedicated to the development of amyloidosis research. “Contributing to research may lead to improved treatment and eventually a cure for amyloidosis and other blood related diseases and cancers,” the sisters and Who is amy? founders hope, as stated on the website.

Affected by their father’s battle with amyloidosis, diagnosed in 2003 and currently in remission, the three sisters realized that their father’s situation hit them harder than expected, with more than just a desire for his regained health and wellbeing but a need to make a difference. Grateful for their father’s recovery and survival but eager to do more, the creation of Who is amy? allowed for greater awareness in their community and nationwide as well as a venue for questions about the disease, what they could do and really understand how to make a difference. The organization became an outlet for them to transfer their emotions into tangible, positive progress.

After encountering limited answers within the medical community, and ongoing doctor visits and misdiagnoses, the Cooper sisters took action in hopes that they could raise awareness, bring a greater understanding to the disease and be a resource for those struggling with the rare amyloidosis. They are committed to promoting health and awareness and supporting research for an amyloidosis cure.

Although the orgaization is Denver-based—two of the sisters are CU Boulder grads and all three currently live in Denver, the sisters hope Who is amy? will have an extended reach and great impact by aiding amyloidosis research and support those suffering from the disease.

“Through these efforts, I hope that patients suffering from amyloidosis and related blood cancers will have better treatment options and researchers will ultimately find a cure, ” said Becca Barry, one of the Who is amy? founders. By raising awareness and funds, Who is amy? is working to empower doctors and researchers nationwide to find a cure for amyloidosis.

Who is amy? Founders (from left to right): Becca Barry, Shelley Cooper and Sarah Cooper.

Let’s meet ‘Amy’:

Amyloidosis is a rare blood disease that affects the body’s organs. The disease begins in the bone marrow when antibodies can’t be broken down and amyloid proteins build up in your organs.
Amyloidosis affects different organs in different people—frequently targeting the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract. In addition to producing red and white blood cells and platelets, your bone marrow makes antibodies — proteins that protect you against infection and disease. After antibodies serve their function, your body breaks them down and recycles them. Amyloidosis occurs when cells in the bone marrow produce antibodies that can’t be broken down. These antibodies then build up in your bloodstream and ultimately can end up in your tissues as amyloid, then interefering with body functionality.

Medical research of amyloidosis is limited, there is currently no cure. Amyloidosis is a debilitating and fatal disease. Unhealthy proteins are deposited in the organs and tissues, creating irreversible damage. The walls of the heart and the tissues of the lungs are often attacked first. Amyloidosis sufferers have trouble breathing, walking short distances, experience chest pain, and have all around poor health.

Because there is no cure, chemotherapy and stem cell transplant are often used to treat the disease.  These leave permanent side effects such as drug dependency, nerve damage, and heart failure.

Amyloidosis is rare, and the exact cause is often unknown. Amyloidosis is most commonly classified as a blood cancer. Approximately 3,000 people are diagnosed with amyloidosis each year in North America. Thousands die never knowing they even had the disease. Thousands of others die because they found out too late to obtain effective treatment.  The small portion of those with amyloidosis who are lucky enough to obtain treatment face the risk of high dose chemotherapy and stem cell replacement. Treatments are available to help manage symptoms of amyloidosis and minimize production of amyloid protein. Progress is being made in research toward finding more effective treatments, but there is no cure and little medical awareness. Early diagnosis is important to allow patients to be eligible for the best treatment options.

A Story of a Survivor: Mike Cooper.

Who is amy? Intro from who is amy? on Vimeo.

Who is amy? was formed in 2003 by Mike Cooper’s daughters; Becca Barry, Shelley and Sarah Cooper. Starting in 2001, Mike Cooper’s health began to deteriorate. Mike was extremely active, an avid skier and hiker, but out of nowhere started to feel exhaustingly weak. Suddenly, Mike had little to no energy and by 2003 could barely make it up a flight of stairs without wheezing, pausing, and pain. He had other strange symptoms such as a blood-type rash on his face and body, trigger finger and weight gain as a result of fluid in his lungs. The process was unimaginable. Mike went from doctor to doctor and was told that he had heart problems. However, none of the typical treatment plans for heart disease were effective and no exam would show accurate results. Finally Mike was hospitalized and an emergency heart biopsy concluded that Mike had a rare, incurable blood disease called amyloidosis. Only a difficult and risky bone marrow transplant could prolong his life. If he didn’t take action immediately, his heart, organs, and body would be overtaken by the disease. Mike is now in remission. His case is more than fortunate.

Mike was treated with a peripheral stem cell transplant, in which his doctors collected his own stem cells, gave him a life-threatening dose of chemotherapy in order to rid his body of amyloid-damaged cells, then transplanted his own cells back into his bone-marrow. The process is extremely risky and the recovery lengthy. Since 2006, Mike has been subject to two autologous stem cell transplants, chemotherapy, medication, hospitalization and a quarantined recovery.

For most, limited knowledge or a late diagnosis may lead to irreversible damage on the body or ultimately, death. In response to Mike’s arduous diagnosis and struggle, Becca, Shelley and Sarah were prompted to take action. They wanted to make it easier for others after encountering limited answers within the medical community concerning the dire situation.

As of yet, there is no cure for this terrifying disease.

Who is Amy? Gala: Rise Against Rare Blood Disease.

Raise Awareness, Advance Research and Save Lives.

The gala event will be held on Saturday, September 11, 2010 from 7-11 p.m. at Casselman’s in Denver. The event will include a fashion show by Wilhelmina Denver models featuring fall collections from A.Line Boutique and Moda in support of the cause for amyloidosis. There will be a short presentation by Mayo clinic’s Dr. Marina Ramirez-Alvardo discussing the severity of the disease and importance of research. The organization will also honor Dr. Jeffrey Matous of the Rocky Mountain Cancer Centers for his continued support of amyloidosis in Colorado.

Tickets are $40 for individuals and $75 for couples and can be purchased online. Tickets purchased the day-of the event are $50. Purchase of ticket includes admission, two drinks and a sampling of food from Denver’s hottest restaurants.

Proceeds benefit the one of the few medical centers studying amyloidosis in the United States: the Mayo Clinic’s Hematologic Malignancies Program and education at the University of Colorado Medical School.
For more information visit: whoisamy.org

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About Lindsey Block

Lindsey Block loves a good picnic, bottle glass of wine and a new recipe. She likes to do all the cliché things: sing in the shower, dance in her underwear in the living room—which her dog doesn't approve of, yet—and take long walks on the beach. She's currently struggling with misanthropy, but working on it every day—although it's hard living in California.

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One Response to “Who is Amy?: The Fight against the rare Blood Disease Amyloidosis.”

  1. Debbie Noll says:

    Just got diagnosed a couple weeks ago. Hopefully find out today what the treatment plan will be.

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