Over the years people have coined such phrases as “Zen of Running” and “ Zen of Cycling’, so why can’t we coin the phrase “Rett Zen”?  Here’s my definition:

“A mind-set and focus of energies directed at the day-to-day enduring care of those with Rett syndrome that is euphoric in nature”.

Somehow is just doesn’t make sense and you may wonder what direction I am going with this post.  Trust me it’s OK I wondered too! I won’t say that I have obtained a Rett Zen, rather a Rett Rut. Rett Rut is akin to the movie Groundhog Day with actor Bill Murray. Bill portrays a character Phil who is stuck in a time loop where the events of Groundhog Day repeat themselves like a broken record.  And so it goes day after day but something wonderful occurs. Phil changes his behavior, and people respond to his new actions, opening up all kinds of possibilities for playing with the unfolding of events.  As it turns out Phil has to be exiled from normal life so he can discover he is in exile from himself. 

As I tackle the multitudes of daily challenges of mothering two young ladies with Rett syndrome I struggle to maintain a healthy focus and balance. There never seems to be enough time in the day to achieve the much-needed warp speed to break the Rett Rut. 

And I suppose that I am not alone exiled in a Rett Rut, so I am going to continue to share my thoughts, ideas, suggestions even more regularly to reroute myself out of Rett Rut mode and into Rett Zen. Maybe others out there can also offer some suggestions along the way. Your comments can be added at the bottom of this post by clicking on the “comments” link below. I would sure like to hear what you have to say about Rett Rut and Rett Zen. Please drop me an email anytime.

Thanks for listening,

 Janine Battistone

Editor, Rett Syndrome Magazine

Janine@RettSyndrome.Info

We were intrigued by this clinical trials study being conducted by the Division of Medical Genetics at the University of Mississippi Medical Center.

The University is recruiting parents of children with Rett syndrome to participate in a study to help determine potential causes of the increasing prevalence of the disorder. The study is being conducted using an anonymous on-line survey available to parents through a secure link.

The study consists of approximately 90 questions about the affected child, siblings, parents, and grandparents, which will take roughly 10-15 minutes to complete. Several families will also be invited to participate in a phone interview. Both the survey and the phone interview are conducted using a self-designated code to protect anonymity and patient privacy. No identifying information such as name, date of birth, address, or phone number will be asked. Only questions regarding the year of birth of family members will be asked. 

For more information click here:

As a former brand marketing professional this announcement caught my attention for two reasons: the brand name of the molecular tool “TaqMan” reminded me of Pac-Man; and I was amazed and grateful that Rett syndrome was spotlighted as a disorder that researchers were studying using this application.

This message also provided me a reassuring reminder that each and every day researchers around the globe get out of bed, leave their own families, travel to work, and spend countless hours of their time and talents working on behalf of people with Rett syndrome. They are indeed vital members of the Rett syndrome community.

Dr. Peng Jin is one of many Rett Researchers around the globe. He is  an assistant professor at the Department of Human Genetics at Emory University School of Medicine and is using an application called a “TaqMan Array Human MicroRNA Panel” to more rapidly and efficiently process genetic samples. Dr. Jin’s research is to better understand how changes in miRNA levels contribute to the disease pathology (study and diagnosis) of both Rett syndrome and Fragile X syndrome.

“Our sample throughput has increased dramatically,” said Dr. Jin. “Before we had access to the TaqMan arrays, we could only analyze about two samples a day. We can now analyze these same samples in about two hours.

Just as the name TaqMan brings back great memories of Pac-Man from my childhood days, I am grateful that people like Dr. Jin now have a funny-named application called TaqMan that is now making his job and that of other Rett Researchers easier.      

We enjoyed reading this article in the July 15, 2007 issue of the St. Louis (MO) Post Dispatch newspaper highlighting nine-year old Ellie McCool’s time at the Renaud Spirit Center in O’Fallon, Missouri, a local summer day camp. Ellie is the daughter of Dave and Mickie McCool. Mickie is a regional representative for the International Rett Syndrome Foundation. 

Apparently Ellie was the first child who uses a wheelchair to ever be admitted into this day camp. The fact that the day camp assigned a one-on-one aid to assist Ellie is a significant indication of the camp’s commitment to including children with disabilities in their summer program. 

Not only was Ellie’s acceptance into the program a ground-breaking event, her mom Mickie succeeded in “breaking the ice” with other kids at the camp by speaking with them about Ellie and Rett Syndrome the first day. It is clear from the story that the introduction succeeded. It isn’t easy for any child the first day of camp or school, particularly one who cannot speak for herself. In situations like this with our daughters we have found it is very helpful to stress the similarities our child has with their peers more than the physical challenges they face.

Congratulations to Ellie and kudos to the McCools and the folks at the Renaud Spirit Center.

An announcement in the July 10, 2007 issue of the Concord Monitor (New Hampshire) newspaper caught our attention. It was a note of thanks from children of a man named Arthur Fillmore who staged a charity golf tournament that raised $22,000 to benefit the International Rett Syndrome Foundation. While most of us never knew Mr. Fillmore, many of us in the Rett Syndrome Community are acquainted with Mr. Fillmore’s daughter Marlyn Curtin, her husband John, their daughter Jocelyn (who has Rett Syndrome) and their son Jake.

Here is the report from the tournament:

“The family of Arthur Fillmore would like to express our sincerest gratitude for the generous support from the community, business associates and friends during the first Arthur C. Fillmore Golf Tournament, which was held June 22 at Loudon Country Club. The tournament was an overwhelming success. Thank you to our many sponsors, supporters, friends and volunteers and to the 144 golfers who signed up. We all had a great day, and next year, we will try to find a way to accommodate more players.

We were able to send a check for more than $22,000 to the International Rett Syndrome Association, which will go directly to the research fund.

Thank you again to all for your support and generosity.

Marlyn, Greg, Cheryl, Kim, Lisa, Neal and Glen, the children of Arthur C. Fillmore

What a very nice way of thanking all who attended and supported the event! The event was a resounding success. It sounded as if they had more people interested in playing than they could accommodate. And, $22,000 is a significant contribution toward Rett Syndrome research. 

This announcement caused me to wonder more about who Mr. Arthur Fillmore was. The most important thing I learned from my research was that he was “a wonderful father who loved life and lived every moment bringing happiness to others.” I also learned that Mr. Fillmore was a successful businessman in the sand and gravel business. He had many cherished loved ones who must deeply miss him since he passed away in a tragic automobile accident last year at the age of 74.

Kudos to all the organizers of this event. We hope the momentum of this year’s event continues into next year. Thank you for bringing happiness to the entire Rett Syndrome Community with your significant donation. I am certain that Mr. Fillmore would be very proud of you. We are too!

Can you imagine risking your own life to raise Rett Syndrome awareness? Over 16 years ago a team of very brave people did just that with the financial assistance of the Canadian Rett Syndrome Association.

In 1991 a Canadian climbing team launched the first Mount Everest climbing expedition for charity, the Climb for Hope. The team was formed by Mr. Ernie Sniedzins to bring attention to the rare medical condition Rett Syndrome, which his daughter has. The Climb for Hope team consisted of climbers from most Canadian provinces. Peter Austen, as leader, and his team overcame many obstacles on their pilgrimage to Everest including lack of money, landslides, and terrible weather to name a few.

Their pre-Everest preparations included dangerous ascents of Mount Communism in the former Soviet Union and Popcatepetl in Mexico. Each of these climbs was a prelude to the real adventure. Everest or, as the Nepali people call it, the Goddess Mother of the World, remained unconquered in 1991 by several international teams. Three climbers reached 26,000 feet but were beaten back by 100 mph jet stream winds. They were lucky to return alive.

I was inspired to learn more about the Climb for Hope via a listing on eBay for a Mount Everest Expedition Coat:

“You are looking at a very rare piece of history. This coat was used on the Climb For Hope Expedition in 1991 by team member Bob Gibson. If you look on the inside of the coat, you’ll find his name badge sewn into it. The coat is in perfect condition and his been hanging in a closest for several years now. I’m in the process of moving and wanted to clean a few things out. “

I also found two other  interesting items about this remarkable event at Amazon.com.

Film: Everest: Climb for Hope.  Awarded the gold medal for Best Informational Documentary at the New York International Film Festival.

Book: Everest Canada: The Climb for Hope. Written by Dr. Peter Austen, the leader of the event.

Thanks to awareness-building efforts such as this remarkable adventure, much progress has been made since 1991 in the quest for a cure for Rett Syndrome.  Still, this story of the team’s struggles to reach the summit illustrates just how challenging and sometimes heartbreaking the efforts to find an eventual cure for Rett Syndrome continue to be.