Mount Kilimanjaro Climb to Raise Money for the Cystinosis Research Foundation
Mount Kilimanjaro Climb by RuthAnn Ahnen in honor of her
daughter Katie Ahnen
RuthAnn Ahnen began her journey on December 30, 2014 to climb Mount Kilimanjaro to raise money for the Cystinosis Research Foundation in honor of her daughter Katie and the cystinosis community. (Pictured are Katie and her friend Shannon Keizer.)
On January 6, 2015 during a severe snow storm and in extremely difficult conditions RuthAnn reached the summit. “It was the trip of a lifetime and certainly tested us, we didn’t quit because we had so many people counting on us,” she said. Thanks to her efforts and support from the community donations continue to arrive in honor of Katie. As yet there is no cure… however, 100% of all funds donated to CRF will go toward research to find a cure.
Katie is the strongest, bravest, kindest, and most resilient person I know. I find those qualities are common traits of those with cystinosis. Katie is 24 and our oldest child. She has struggled with her health most of her life. The effects of cystinosis destroyed her kidneys and she received a kidney from her dad six years ago. She takes over 30 pills and medications daily to keep her healthy. At times it was over 50 plus shots. The advances made through research have greatly improved her quality of life. Katie currently is doing well and works as a phlebotomist at a local hospital. The #1 thing she and others with cystinosis wish for is a cure and the Cystinosis Research Foundation is funding research studies that are bringing that day come closer to being a reality.
Cystinosis is a rare metabolic disorder that affects less than 500 people, mostly children. It is characterized by the abnormal accumulation of the amino acid cystine in each of the body’s cells. Build-up of cystine in the cells eventually destroys all major organs of the body including the kidneys, liver, eyes, muscles, bone marrow, thyroid and brain. Medication is available to control some of the symptoms but it still remains incurable.
Federal funding of or research on Cystinosis and other orphan diseases is virtually nonexistent. That is why any amount you chose to donate will help. Katie wants so badly to be cured not just for herself but mostly for all of the wonderful friends she has met through the cystinosis community. I am climbing this mountain in honor of our daughter Katie and all those affected by this devastating disease. Please join us in our quest for the cure. With your donation, you are helping the dream of life without cystinosis come true!
Thank you for help and generosity.