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.

Wednesday, September 30, 2015

October is about Awareness and Hope

Awareness.  It was football season, just like now, when we became aware of a little word that is a big monster - Rett.  A friend's daughter, Kate, had just been diagnosed and over the next couple years her developmental slowness was not obvious due to her young age.

Somewhere in there Hope appeared in a word - "Reversible".  Science had found the destination and "Reverse Rett" became, and still is the anthem.  But the distance we need to travel now is great, and the map is mostly blank with the end, the start and slow path being drawn.

Science is moving rapidly relative to most scientific cure endeavors, thanks to a whole lot of empowered families, doctors and

But relative speed for science is slow as a tortoise in a race with the hare to Rett daughter's families, friends and supporters. and those families have teamed with doctors to streamline processes, dedicate funding to the most relevant studies and supporting the girls and their families while there.  This team will catch up, and like the fable, the tortoise will cross that line, defeating the hare named Rett.

Thursday, April 17, 2014

How to track my progress during the Boston Marathon 2014

Tracking me during the marathon
I will be in Wave 4, Corral 8. Exit Athlete’s Village at 11:05 a.m. and start at approximately 11:30 a.m. Eastern Time.

I will be finishing between 3:45 - 4:30 p.m. Eastern Time.
Here’s how you can follow my marathon progress (directions take from the marathon website):

My Bib #:  29362
  • TEXT - Simply text the athlete's Bib Number to 345678 using your US mobile phone. You will then receive an sms text response with instructions on how to submit a runner’s bib number. You will receive up to 6 texts per bib number. Message & data rates may apply. Text STOP to cancel. Text HELP for help. Available on participating carriers only. Privacy Policy at:
  • EMAIL - Continue to the registration page for the AT&T Athlete Alert on the race website. Sign-up using your mobile phone number for SMS text message updates, or by entering an email address for email updates. Click here to sign up now.
  • If you register a mobile phone online, you will receive a message asking you to confirm your intention to receive updates from the 2014 Boston Marathon AT&T Athlete Alert. Once you’ve completed registration for AT&T Athlete Alert, you will receive text updates courtesy of AT&T and the Boston Marathon when your runner has crossed the following points on the course:
  • 10K
Refer to this link if you have any problems or contact me.
Thank you for all of your support and I can’t wait to cross the starting line in Hopkinton and the finish line in Boston! #BostonStrong #ROAR #ReverseRett

Online Race Coverage - Universal Sports 

I think you can try to log in with your DirectTV, Dish or other cable/satellite provider here.  Not sure if it's a charge.

CAM North Staff on KCCI day Tuesday.  Thanks for providing the purple backdrop for the day, the high school did a fabulous job as well!

I will be uploading pictures and accounts to my FB & Kate's FB page all weekend -Search if you haven't found it yet.

Team Kate - From CAM to the Boston Marathon 2014

Monday, April 7, 2014

Last of the Long Runs and Home stretch on training

Team "We've Got the Runs"
While my intent was to journal my workouts through the entire training process, life gets in the way and though I love writing there just wasn't enough time to stay on top of my blog.  The good news is outside of the Alumni Tournament Weekend, my training runs went as planned and I feel better than ever going into tapering and the countdown to the Boston Marathon.  I had my last really long run yesterday in Cedar Rapids and officially two weeks from the race I can now enjoy medium and short runs from here on out.

Marathon Relay & Casey:
My longest run happened a few weeks ago as an amazing turnout for our marathon relay event spurred a nice run to Adair and back, my legs feeling better than ever and I welcomed the thought of going another six miles after the 20 eagerly.  I saw most people, but being on that road precluded me from meeting several of the groups, but it was a widely successful day to say the least.  The next week saw me run to Casey from Anita getting my 16 miles in all in one shot.  Thankfully I had a ride home and got to have spaghetti at Troop 70's annual spaghetti supper.

Moving Ahead:
Now we're planning the weekend and coordinating what and where we are doing things.  What seemed so far away is now right on the doorstep and stuff's getting real for sure.  More to come as the weeks turn into days going forward.

Thursday, January 23, 2014

Week #4 - Post-Purple out and oh, so many miles

Purple Out - Amazing evening and thank you, thank you, thank you to everyone and everything you did to make it a memorable event both emotionally and monetarily.  Thanks to the Cheerleaders for the pop shoot and ribbons; CAM North 1st grade for all of the items they sold and many they made or thought up; the pledges and straight donations; and those who ate our walking tacos.

A big congratulations to senior (and 1st grade intern) Erin Daugherty who hit two free throws and the game winning layup in the final 24 seconds of the game to lift the Cougars to the upset victory.  Her and Alyssa Kragelund, along with many others, played their hearts out in a effort to bring the victory home.  Erin said, "I really wanted to win this game."

It was fitting that the money raised during the t-shirt sales and the fundraising that night, pushed us over the goal of $7,000 and where we stand roughly today is just over $8,000 raised.  Our new goal is $10,000 with the expectation of reaching it soon.

Last Week Training - I've hit the vast majority of my miles and all of my dates in my training the most recent two dates had me run 10 miles on Saturday and 12 yesterday.  Today my legs feel great after this unprecedented total and my fourth week begins tomorrow.  I've been stretching and doing extra exercises that are important in this process.

Thursday, January 16, 2014

Week #3 - Upping those miles AND PURPLE OUT!

I'm late this week as this and the next couple have been filled with games along with other obligations.  The good news is the miles went from mid-30s to 50 AND so far it's felt very good, like I'm stronger and more prepared.  This is great going into Purple Out Night on January 17th at CAM High School as the confidence I now have will help me deliver the message we intend to convey Friday.

Monday - Rest & Yoga  Done!  20 minutes only (meetings)
Tuesday - Interval Training (3x2000m, 3 minutes between each) 10 K pace, 8 miles  Done - 7 miles though...shaved one for the treadmill
Wednesday - 3 miles Done- 3 miles
Thursday - MLR - 10 miles (Medium Long Run) at an easy pace - Done - 9 miles (one for the treadmill)
Friday - 4 miles
Saturday - Tempo - 8 miles with 30 minutes at Marathon pace in the middle
Sunday - Distance - 12 miles at an easy pace.
    Total distance:  50 miles

We picked up the 416 T-shirts for the Purple Out on Wednesday and distributed them to the various buildings and individuals.

The 1st grade is doing a bake sale titled - "Bake for Kate" and doing a table with homemade items

We're having a walking-taco bar for a free will donation and the 1st graders are also selling pencils and other items.

We are asking for pledges per point scored (individual teams, combined, girls, boys or both).  So you can plan ahead, here are the scoring averages for the four teams:

Girls - CAM  33  Boyer Valley 47;  Boys - CAM 39  Boyer Valley 52

We will be stopping at the end of the 3rd quarter of the boys game so their 3 quarter averages are:

Boys 3 quarter average - CAM 26  Boyer Valley 33

Come out and support our cause, it promises to be a great night!

Tuesday, January 7, 2014

Week #2 - Rest, nutrition and more miles

Last week reflection and results:  I did all of my runs and about 80% on my exercises and stretches.  Had to do the long run on the treadmill Sunday morning due to the cold which was not a lot of fun, but I've got to do what I've got to do.  Feeling good physically and mentally ready for more intense intervals this week.

Week #2, 15 weeks until the race:  Generally speaking still lower miles at 33 minimum, stepping up the interval training, getting a "rest" day and it looks to be warmer, so maybe no treadmill.

Monday, Day 1 - Rest, but I will be doing P90X Yoga on these days to help with stretching.

      Done - Went really well, though having to set up the late start phone call got me out of "Yoga-belly 7"

Tuesday, Day 2 - Seven miles of interval training.  Three sets of 800m-600m-600m with four minutes between sets and 30 seconds between running them at 5k pace.

Wednesday, Day 3 - Four mile run

Thursday, Day 4 - Tempo Run - Seven miles - two 15 minute marathon paced runs in the middle with five minute recovery in the middle.

Friday, Day 5 - Four mile run

Saturday, Day 6 - Three mile run

Sunday, Day 7 - Ten mile run

Total Miles - 34 miles

Nutrition - Mixed bag, still having to cut some of my "grazing" as watching the Iowa game on New Year's Day proved that and now that most of the Christmas candy and cookies are gone I can really cut out the sweets.  Meals have been healthy and good.  We will have to do the sweet potato chips in the microwave more often, they were yummy!