Monday, November 28, 2016

The battle to defeat Rett has recruited a new warrior - Help Andrés Cosano Molleja raise money to go directly to Rett Syndrome research

Kate Kauffman - Photo by Andi Kinzie

Tuesday, November 29th has been tagged "Giving Tuesday" and I offer up a cause for your giving that goes 100% towards helping young girls like Kate Kauffman, CAM North 4th grade student.  

Rett Syndrome affects Kate Kauffman and her family daily, restricting her movements, taking her voice and causing a variety of other life altering symptoms.  

Three years ago I started raising money for research, and training, by committing to run the Boston Marathon.  Andrés Cosano has started on this journey, with the same objective, find a cure for Rett and find treatments to diminish it's destructive symptoms.   Contributions to Andrés Cosano's Crowdwise page goes directly to the Rett Syndrome Association of Massachusetts (RSAM), an organization that selects trials (or research) that have the greatest impact in curing or diminishing symptoms.

 The following story by ..... published Friday, Nov. 25 in the Audubon County Newspapers and Atlantic News-Telegraph explains how Andrés got to the USA and involved in this important cause.
Pink and Purple Out set for Dec. 2 at CAM
By Jill Christensen
The CAM Cougars are hosting their annual Pink Out on Friday, Dec. 2 as they host the E-EHK Spartans. However, this year’s event is going to be a little more colorful, as they have combined the Pink Out for Cancer with a Purple Out for Rett’s Syndrome. Rett’s is a neurodevelopmental disorder that affects girls almost exclusively.  Rett’s syndrome affects one’s neurons. Neuron’s control our every thought, word, action and movement. They fire electrical signals and transmit information-what we see and hear, for instance-through the synapses that connect to them. The neurons in children with Rett are about 10-20 percent smaller and their cell membranes have a different fat composition, which affects those synaptic transmissions. Children with Rett’s have normal early growth and development, followed by the loss of purposeful use of the hands, slowed brain growth, problems walking, seizures and intellectual disabilities.
Kate Kauffman, 10, daughter of Nick and Heather Kauffman of Anita, and student at CAM schools was diagnosed with Rett’s when she was two.
Kate was born a seemingly normal, healthy baby girl. She sat at six months of age, learned to pull herself up and creep along the edge of the furniture and started to say a few words and clap her hands, until the age of 15 months when her skills stopped developing and she lost the ability to form words.
Since her diagnoses, the Kauffman’s have done everything they can to help find a cure for this debilitating disease and to raise awareness.
They found a doctor and a clinic in Minneapolis and started an extensive therapy regimen, which has helped Kate immensely. Because of events like the Purple Out, and other successful fundraising done by Rett families, Kate was able to participate in her first drug trial in Minneapolis.
“Since our first fundraising event in 2010, there have been multiple drugs advanced to drug trials to find symptom management and one day, a cure,” Heather stated. “We created our ROAR –Reverse Our Angels Rett’s-campaign two years ago to help spread awareness and raise money to further these research efforts.”
Hosting the Purple Out for Kate, on Dec. 2nd holds a special significance to the Kauffman
“Both teams have ties to Kate,” said Heather. “Our oldest daughter is a freshman this year and basketball is her favorite sport. We are playing E-EHK, and Kate’s aunt, Sara (Paulsen) lives in Exira.”
T-shirts promoting the event were sold and a Taco Bar will be held during the game with all proceeds going towards Rettr research.
The Purple Out, came about after finding out that Anita resident, Andres Cosano, received a bib to run in the 2017 Boston Marathon representing the Rett’s Syndrome Association of Massachusetts.
Andres came to Anita with his wife Maribel Manjavacas and their children Paula, Maria and Gerimo. Maribel is part of an exchange program and teaches Spanish at CAM High School.
He is working to complete his doctorate, and is an accomplished musician. He also has a running background, just completing the Des Moines Half-Marathon finishing 107th out of 4362 finishers.
Here are Andres’s responses to the RSAM in his application on why he wants to run to help raise money for Rett Syndrome research.
"My personal experience with Rett syndrome started in Spain, before we decided where would live in USA. We didn’t know Anita’s Community, Mr. Giegerich (CAM High School Principal) gave us some insight and we could verify how nicely people joined in a common and charitable project: Kate’s voice. It was amazing, that touched us deeply. After that I could confirm by internet that Rett syndrome is another rare disease widespread for all the world, for the moment it does not have a cure but fundraising for researching is the channel to give confidence to girls and families affected for this rare disease.
My family and me are very lucky people who took the important decision of living in USA for a while. We left very far away our family, friends, jobs, house, in short our comfort zone. When you set out on a journey like this, you only think of your own capacity to cope with things, but you don´t expect people to help along the way. Anita Community has helped us much more that we need, people were for the very beginning in our shoes, and this was the most astonishing welcome we could imagine.
The values of generosity, solidarity, effort, respect, love are pillars of our family, to take part in Boston Marathon for Team Rett is a challenging and awe-inspiring way to fight against this unfair disease, promote awareness, fundraise for researching and give back our gratitude to all Anita’s Community."
Giegerich himself ran the Boston Marathon for Kate in 2014 under the bib of the RSAM.
Kate recently finished that drug trial in Minneapolis and physically she is doing quite well, says
“She just turned 10 on Nov. 18. She uses an eye gaze device called Tobii that helps her ‘speak’. Because of the huge success of local fundraisers, like the Purple Out, awareness is spreading making drug trials like the one Kate just finished available in more sites instead of just on the coasts.”
Kate is the granddaughter of Chuck and Linda Kauffman of Audubon. Nick Kauffman is a 1990 graduate of Audubon High School. Heather and Nick have four children: Grace, Joseph, Kate and Zachary.