November 10, 2009

IRSF Awards $2M for New Research Programs

Foundation announces new funding mechanisms to fast-track therapies

The International Rett Syndrome Foundation (IRSF) announced that it is awarding grants totaling $2 million to support 18 innovative research projects in 2009. Each project will explore new ideas that have the potential to drive the field forward and will speed the translation of research into treatments and a cure for Rett syndrome. With this announcement, the foundation has cumulatively funded over $20M in high quality, peer-reviewed grants that have contributed to the most significant advancements in the field to date, including the 2007 reversal of Rett syndrome in a mouse model of the disease.

For further information Click Here

Autism Spectrum Disorders will be the Focus of $12M in stimulus funds

Researchers with the UC Davis MIND Institute will receive nearly $12 million over two years to study causes and treatments for autism and other disorders, in funding provided by the American Recovery and Reinvestment Act, or the federal economic stimulus.

The funding will support a wide array of MIND Institute studies, including the Childhood Risks of Autism from Genetics and the Environment (CHARGE) study, the Autism Phenome Project (APP), the Infant Sibling Project and the Neurotherapeutics Research Institute (NTRI).

The MIND institute recipients include Dr. Janine LaSalle, professor of medical microbiology and immunology, who is a member of the IRSF Scientific Advisory Board. Dr. LaSalle will receive approximately $100,000 to study genetic and environmental contributions to the causes of Rett syndrome.

“We are delighted that Dr. LaSalle’s laboratory has been selected as a recipient of these funds. This award presents a welcome infusion of resources to augment Dr. LaSalle’s currently funded research into the underlying causes of Rett syndrome,” commented Dr. Antony Horton, IRSF Chief Scientific Officer.

More information about the institute is available online at http://www.ucdmc.ucdavis.edu/mindinstitute.

IRSF Researcher to Receive Two Grants to Study Read through Drugs

Dr. Carolyn Schanen, MD, PhD, Director of the Nemours Center for Clinical and Applied Genomics, is the recipient of two recent grant awards from the International Rett Syndrome Foundation. The first proposal titled, “Preclinical Testing of Nonsense Suppression in a Rodent Model of Rett Syndrome,” will be complemented by second proposal titled, “Suppression of Rett Nonsense Mutations by Pharmacological Agents.” Together the awards will total funding in the amount of $150,000. These projects will provide important "pre-clinical" information that is essential for developing several drugs that Dr. Schanen and her team have identified as potential treatments for a subset of Rett Syndrome patients (approximately one third) who have nonsense mutations in the MEPC2 gene.

IRSF Represented at the Society for Neuroscience’s 40th Annual Meeting

IRSF was represented at the Society for Neuroscience’s 40th Annual Meeting, which took place between October 17th and October 21st in Chicago, IL. This marks the second year the IRSF has had a presence at the meeting, which is the premier event for Neuroscientists to meet and discuss their research.

This year’s meeting featured several talks on autism spectrum disorders and a symposium dedicated to BDNF. There was also a poster session featuring the latest research findings in Rett Syndrome.

While attending the meeting, IRSF staff were afforded the opportunity to speak with many of IRSF’s funded investigators and Scientific Review Board members who stopped by at the IRSF booth. A sizeable number of attendees expressed new interest in working within the Rett syndrome field through information on IRSF’s grant funding programs supplied at the booth.

A more detailed article outlining scientific highlights of the conference will appear in the Winter IRSF Newsletter: “The Rett Gazette”

Upcoming Workshop to focus on Advancing Research for Rare Diseases

The National Institute’s of Health (NIH) Office of Rare Disease Research (ORDR), will shortly host a workshop titled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data”. The objective of this workshop is to discuss the development of an internet-based platform for a common rare disease patient registry. The proposed rare disease registry would enable different patient organizations who are considering establishing a patient registry, to be affiliated with other, currently existing rare disease registries.

A variety of thought leaders are expected to attend the workshop where they will discuss the overall concept of a combined rare disease patient registry. Participants will seek to harmonize standardized common data elements, vocabulary, and open source software to enable the free exchange of data and information in order to facilitate clinical research and clinical trials. The workshop will take place on January, 11-12, 2010, in Bethesda MD.

For further information Click Here

New Consortium Provides Researchers a One Stop Shop for Discovery

A new consortium funded by the NIH’s National Center for Research Resources, aims to provide researchers with a centralized resource combining catalogs of reagents, cell and tissue banks, and model organisms so that they can spend less time searching for, or re-developing these tools.

The project, called the eagle-i Consortium received a $15 million NIH grant for this new collaborative effort. Researchers from Harvard Medical School, Dartmouth University, Jackson State University in Mississippi, the Morehouse School of Medicine, Montana State University, Oregon Health and Science University, the University of Alaska, the University of Hawaii, and the University of Puerto Rico will join forces in seeking to connect researchers at these institutions to resources developed at the nine schools. Ultimately, the aim is to create a national research resource discovery network open to the wider research community.

For more information Click Here

California researchers receive $10M towards iPS cell research

The National Heart, Lung and Blood Institute has awarded a seven-year, $10 million grant to researchers at the Gladstone Institute of Cardiovascular Disease and Stanford University School of Medicine to advance research on how induced pluripotent stem cells can help fix damaged heart muscle.

For more information Click Here

2009 H1N1 Influenza Information

2009 H1N1 (sometimes called “swine flu”) is a new influenza virus causing illness in people. This new virus was first detected in people in the United States in April 2009. This virus is spreading from person-to-person worldwide, probably in much the same way that regular seasonal influenza viruses spread.

Click here to get the answers to these important questions about H1N1 and its potential risks for Rett syndrome.

IRSF Family Advisory Board - APPLY NOW!

We encourage interested family members to apply for the IRSF Family Advisory Board by November 14, 2009

Make a difference for all families touched by Rett syndrome! The IRSF Family Advisory Board is comprised of 15 active, passionate members who bring personal and professional talents and skills to the table to help advise IRSF on Family Support programs and services. We seek family members (mothers, fathers, grandparents, aunts, uncles, adult siblings, etc) who especially have expertise within the following areas:

• An individual with RTT: young child, school-age child, teen, young adult, older woman, or an individual with RTT who has passed away
• Family make-up: Married, single, divorced, remarried, or adopted child
• Therapies: especially OT, PT, Speech/Communication, Nutrition, Marital/Family
• Medical
• Residential Placement
• Special needs law
• Support services
• Advocacy
• Public relations, media reporting
• Fundraising
• Programs/services/materials development and copywriting

Click here for more details and to download an application Consider - then apply - deadline is November 27, 2009

October events – off the charts!

October Awareness month was chock full of successful fundraisers all over the country! From Strollathons to Galas, families have come together to raise the crucial funds needed to help IRSF find treatments and a cure for Rett syndrome. Below are a few highlights.

READY, SET, STROLL!!!

To kick things off the New Jersey, New York, Fairfax-VA and Chico-CA Strollathons collectively raised close to $100,000 for Rett syndrome!!! Thanks to the Medlin’s, Greenfield’s, Lebson’s, Kinzler’s and Herrick’s for hosting such successful Strollathons across the country. Your hard work and dedication to IRSF and the cause are unprecedented and we thank you from the bottom of our hearts.

9th Annual Boston FFW – Knocks it out of the park once again!

The 9th Annual Boston Festival of Food and Wine, once again, did not disappoint. Hosted by Jane and Mike Joyce, Paula and Chuck Curley and Ariane and Christian McMahan, the Boston FFW raised over $550,000 for Rett syndrome research! With well over 600 guests in attendance, the State Room was packed from window to wall with Rett supporters. Families and friends came together to celebrate the lives of these amazing girls and women who have touched so many lives. Thank you to the Host Committee and the countless volunteers that make this event possible year after year. Your unwavering support to IRSF and the cause is deeply appreciated; we couldn’t fight this battle without you. Thank you.

Spending Time Ending Rett II – Not a dry eye in the house!

To wrap up October, the 1st Annual Houston Strollathon was a huge success! On October 31st over 400 people gathered at Rob Fleming Park in The Woodlands, TX to Stroll and Roll their way to a cure. With over 30 families in attendance this first time event raised well over $35,000 that beautiful Saturday morning. Strollers and Rollers participated in a silent auction and a raffle and enjoyed the music of The Seldom Herd and Kevin and Colton Black. Schwan’s foods handed out ice cream and the Salvation Army provided water and Halloween treats. After the walk the Halloween Costume Contest commenced. Winners included Lady GaGa, an Angel, a Cowboy and a Lady Bug. The costumes were great and everyone had a spooking good time! A BIG thank you goes out to Kenna Seiler – the brains behind this 1st Annual Strollathon! We cannot wait to see what she has in store for next year! Thank you to all of the volunteers and sponsors for your support! We couldn’t have done it without you!

On the evening of November 1st, Dosey Doe in The Woodlands, TX was packed with IRSF supporters and country music fans as Kevin Black opened for his brother Clint. Kevin was quite the entertainer, as usual – one moment he had the room in stitches with his southern charm and the next he had them in tears as he sang the song he wrote for his late daughter, Cortney, who lost her battle to Rett syndrome just a few years ago. Kevin wrapped up his performance as an auctioneer in the Live Auction portion of the evening. He once again had the entire place in tears, but this time from laughter. The Live Auction was not only extremely entertaining but it raised $48,000 for IRSF and Rett syndrome research!! Two of the items, both Autographed Clint Black guitars, went for well over $10,000 each!!

After a standing ovation from the crowd, Kevin was joined on stage by his brother. Clint Black began his performance with some of his classics and the crowd loved every second of it. The involvement and support of the Black family means so much to all of us at IRSF and to the families – thank you to Clint, Kevin and the rest of the Black family for all they do.

As most of you know, IRSF recently kicked-off the Research to Reality Campaign – a major gift campaign geared toward accelerating treatments and reversing Rett syndrome in which Country Music Star Clint Black will be chairing. To launch this campaign IRSF was awarded a $1Million challenge grant by the Pioneer Fund, a private family foundation out of Denver, CO. This incredible gift was a result of Clint Black’s relationship with Figure Skating Star Scott Hamilton who is on the Pioneer Fund’s Board of Directors. During his performance on Sunday night, Clint presented IRSF with the $1Million check from the Pioneer Fund. On top of that, Schwan’s foods, who have also partnered with IRSF, presented Clint and IRSF with a check for $25,000!!! This is a result of Schwan’s 6-state fundraising truckload sale.

The evening continued to get better from there, if you can imagine that! Clint continued to deliver an incredible performance and toward the end he invited his brothers Kevin and Brian up on stage for a “Black Family Jam Session”. The brothers were also joined by Kevin’s son Colton. The 4-man show was one of the highlights of the evening. Their proud mother stood the balcony as they sang, told jokes and all around entertained the jam-packed Dosey Doe house. It was a heart-warming, magical evening and really set the tone for the path that lies ahead for IRSF and our supporters.

As the weekend came to a close, friends, family and golfers gathered one last time to show their support for the sweet Rett angels. On Monday November 2nd the 6th Annual “Tee It Up For Rett” Golf tournament pulled in close to 100 golfers. At the Bentwater Golf Course in Lake Conroe, TX the weather was perfect and the golf swings were even better. As golfers played their best games they were greeted by Clint and Kevin Black along the course. Shaking hands and taking pictures, Clint and Kevin thanked each and every golfer for their support of IRSF.

Last but not least, IRSF would like to extend the biggest thank you to Dave Clements. Dave, along with Kenna Seiler, was the initiative behind this incredible weekend. He is one of IRSF’s biggest supporters and when thanked by IRSF staff he replied – “It’s not about me, it’s not about you, it’s about the girls – they are why I do what I do.” So on behalf of the Board and Staff of IRSF and the countless families and their Rett angels whose lives you have touched – THANK YOU, Dave, for all that you do and your unyielding commitment to the cause. We are proud to have you on our team.

RETT SYNDROME AWARENESS MONTH CELEBRATION

Texas Children's Hospital, Houston, Texas

The Blue Bird Circle Rett Center (Rett Center) in Houston, Texas, held their annual event to recognize October as Rett Syndrome Awareness Month, on Tuesday, October 13, 2009 from 11:00 a.m. until 1:00 p.m. The event was held on the 3rd floor Auxiliary Bridge (crosswalk) area at Texas Children’s Hospital.

The Rett Center wishes to thank the families who attended (approximately 10 families) and helped to celebrate this event with them. The girls with Rett syndrome who attended were sweetly serenaded by Kevin Black, singer and songwriter. Mr. Black is well versed with Rett syndrome and how it affects families of these girls. His daughter, Cortney, passed a few years ago from complications associated with Rett syndrome.

Dr. Daniel Glaze, the Medical Director for the Rett Center, and Dr. Kathleen Motil, GI-Nutritionist for the Rett Center, were also in attendance, along with Nurse Judy Barrish and other staff members, Shaterra Robinson and Gay Horelica. Cookies and water were provided, and brochures were given to passersby to bring more awareness to Rett syndrome. Brochures were handed out, research posters displayed, and anyone interested could ask questions from the personnel about Rett syndrome.

IRSF is gearing up for the 2010 Fundraising Season!

2009 has been filled with Strolls, Runs, Walks, Galas, Pig Roasts, Lemonade Stands and more! October Awareness Month was booming with a mountain of Phantom Tea orders and now over 100 Care and Cure Café pages!! Because of all of YOUR fundraising efforts we are able to continue to fund the much needed research to help us find treatments and a cure for our girls. Whether you plan, host, assist or participate in a fundraising event or effort your help is our hope – so thank you! We are now beginning to plan for 2010 and would love to hear about your ideas and plans! Some of you host annual events – if so please give the IRSF Staff a heads up as soon as possible of the date and any details you’ve already worked out so that we can best assist you and make 2010 the best year yet! Ask IRSF Staff members how your event’s proceeds can be matched by the $1Million Challenge Grant!! That’s right – SOME OF YOUR PROCEEDS WILL BE DOUBLED!!! Don’t forget to check out our fundraising resources page for all things fundraising. Keep checking back for sample letters to help you get your community and family and friends involved!

• Also, check out www.firstgiving.com/rettsyndrome. This is IRSF’s newest tool to help make your fundraising efforts more fruitful than ever! All you need to do is email jgrammer@rettsyndrome.org to have your event added. Once your event is added to the list you and your friends and family can build your very own team and fundraising pages! It’s extremely easy and you’ll receive step by step instructions on how to personalize your page.


• As most of you know, IRSF has been awarded a $1Million Challenge Grant to help us kick off our Research to Reality Campaign! If you have not hosted an event in the last couple of years or even ever – NOW is the time to do so! Every dollar raised at brand new events will be matched by this grant. So by raising $20,000 you’ve really raised $40,000!! How great is that?! So far Strollathons in Arizona and Southern California, a Gala in Washington DC and events in Kansas, Utah and Louisiana are in the planning stages!! Join IRSF’s fundraising efforts in 2010 and help us make this a record-breaking year!


• Click here link to read about some amazing families in Baton Rouge, LA that are getting involved. If you would like help getting YOUR local media’s help spreading awareness contact the IRSF office at 1-800-818-7388.


• The IRSF Events pages are filled with stories and pictures of 2009 fundraisers all over the country so be sure to check those out!

Your support is always greatly appreciated. We are here to help make your fundraising efforts as easy and rewarding as we possibly can. For more information on how to plan an event, get involved with an existing event or to just bounce around some ideas please email Jenni Grammer at jgrammer@rettsyndrome.org.

HAPPY FUNDRAISING!

Event Chairs!

We need your event summaries!

Please send your summaries and pictures to Jenni Grammer at jgrammer@rettsyndrome.org by November 15th in order to have your event mentioned in the next IRSF Rett Gazette!

MyBlastoff Network

My name is Mike Hazard. My 2 1/2 year old daughter Kylie has Rett.

I believe I may have an incredible opprtunity to raise money for our angels. Please go to this link and watch the video clips.

This site has very appealing features that most people will want to make their homepage. There are over 400 retailers in the "Mall" section like Target, Macy's, Sony, Dell and Southwest Airlines, etc. They offer cash back from 1% to 15%. The best part is that you get paid when your friends shop too, out to 10 degrees of separation. Exponentially, that could take someone's network into the millions. Currently, it is only open by invitation. After joining you too will be able to invite people.

I plan on donating all of the money I make to IRSF. If everyone signs up and gets all of their family and friends to sign up under them, we could all donate the money to IRSF.

I know individually, this might not sound like much. But every dollar counts. Even if, individually, someone only made $100.00 a year to donate to IRSF, but if there were 4,000 families involved, that would equal $400,000.00. If all of our funds can somehow be contributed to the new "Research to Reality" dollar matching program, together, this could be huge.

This site is supposed to be one of the biggest launches in history. To give you an idea Facebook signed up 100 million people in 9 months. Facebook doesn't offer any incentives but this free shopping network does.

For anyone that attended the first annual Rett Monster Bash last weekend, I was the $1,000.00 Best Costume winner that donated it right back.

Thanks for reading. Let's kick Rett's you know what!

Governor Proclamations

IRSF would like to take this opportunity to let you know that a state proclamation declaring October as Rett Syndrome Awareness Month may have been obtained in your state. Please visit our State Proclamation page of our website to get a copy of your state’s proclamation. These proclamations are meant to be used and IRSF strongly encourages you to incorporate these proclamations into your fundraising and advocacy efforts.

Friends and Family

Take part in our 13th annual Phantom Tea fundraiser and our online Care and Cure Café! Friends and Family can donate in honor of your Rett angel in a quick, easy and fun way! These “tea parties” will help IRSF continue to fulfill IRSF’s mission for families affected by RTT.

2009 Phantom Tea

IRSF Care & Cure Café

Please contact jgrammer@rettsyndrome.org or call 1-800-818-RETT with the correct email address to ensure that you receive the invitation to the Care and Cure Café.

Please Update Your Contact Information with IRSF

If you have moved or simply changed email addresses or phone numbers, please contact IRSF in order to update our records.

We have numerous incorrect email addresses, home addresses and phone numbers in the database. We want to be able to inform you all of Rett research, news, family gatherings, fundraisers, etc...

Please contact Lisa Hayden at lhayden@rettsyndrome.org or by calling 1-800-818-7388 to easily and quickly update your information.

Regional Representative Program

Reach out and meet your Regional Rep today!

Make sure your Rep has you on his/her list so you can be informed of family gatherings and fundraisers. Each IRSF Rep very much wants to get to know ALL families! Please contact Jennifer Endres if you have trouble connecting with your Rep or if you have questions about the program.

Would you like to become a part of the Regional Rep Team?

IRSF has recently received some interest in filling the position of Regional Representative for a few of our vacant states! Be a pillar of support for Rett families in your state and get all of our Regional Representative positions filled! Please contact Jennifer Endres at jendres@rettsyndrome.org for more information and details. The following states remain in need of a Rep:

IRSF Networks

IRSF has recently launched and successfully grown three main support networks known as the Grandparents Network, The Dads Network and the Parents of Males with MECP2 Mutations Network. These networks provide the support needed to understand and overcome the unique obstacles that having a child with Rett syndrome or a MECP2 Mutation brings to a family and in turn the members of these networks will help their family understand and overcome as well.

These Networks will:

Join one of our support networks today!

The Parents of Males with MECP2 Mutations Network
The Dads Network
The Grandparents Network

Questions?
Contact Jennifer Endres at jendres@rettsyndrome.org or call 508-362-2220

Who says cookies aren't good for you?

A big thank you goes out to The Christy Cookie Company and everyone who took part in voting for IRSF in The Christie Cookie Company Charity Contest. IRSF did not win but we did come in the top 50 for which we received $100.00 check and a tin of delicious cookies! Thank you IRSF supporters. Your active involvement helps us get closer to our goal of spreading awareness and finding treatments and a cure for our girls!

Twin study underscores role of genes in autism

By Amy Norton

NEW YORK (Reuters Health) - When one identical twin develops the developmental disorder autism, the risk of the other developing it is high -- substantially higher than it is for fraternal twins, a new study confirms.

The study, which gathered information from 277 twin pairs in which at least one had an autistic disorder, found that when one identical twin developed an autistic disorder, the other one also did 88 percent of the time.

That compared with 31 percent among fraternal twins. Unlike identical twins, fraternal twins are no more genetically similar than non-twin siblings.

What's more, researchers found, identical twins also had greater similarities in the form of autism that they developed, their level of day-to-day functioning and the risk of intellectual impairment.

The findings, reported in the Archives of Pediatrics & Adolescent Medicine, confirm the importance of genes in autism development.

Autism spectrum disorders (ASDs) include several developmental brain disorders that hinder a person's ability to communicate and interact socially. ASDs range from the more-severe cases of "classic" autism to Asperger's syndrome -- where a person has normal intelligence and verbal skills, but difficulty socializing and understanding subtler forms of communication, like body language and vocal tone.

"Autism research has been guided by one important observation for the past several decades - that autism has a large genetic component," Dr. Paul Law, of the Kennedy Krieger Institute in Baltimore, told Reuters Health in an email. "That observation was made through twin studies."

This new study confirms those findings using a much larger sample of twins, according to Law. The data come from an online registry called the Interactive Autism Network, which Kennedy Krieger set up two years ago to connect parents of children with autism with researchers.

Of the twin pairs in the current study, 67 were identical and 210 were fraternal. Among identical twins, all females had been diagnosed with an ASD, whereas the "concordance" was 86 percent among males.

The pattern was different among fraternal twins. Among pairs in which at least one was female, when one sibling developed an ASD, the other did 20 percent of the time. That figure was 40 percent when both twins were male.

The findings also go beyond confirming concordance in identical twins' odds of developing an ASD, Law pointed out.

"We show that important characteristics of ASD, such as the type of ASD, level of functioning and presence of other psychiatric disorders are more similar...among identical twins," he said. "Thus not only are they more concordant overall, but the pattern of their disease is more concordant."

The researchers also found that among identical twins, the second sibling was unlikely to be diagnosed with an ASD once a year had passed since the first sibling's diagnosis.

"Basically," Law said, "our data suggests that parents of identical twins can stop worrying after about 12 months have passed since the diagnosis of their first twin."

In contrast, he said, fraternal twins still seem to have "some degree of risk" as much as four years after the first twin is diagnosed.

While experts generally agree that genetics plays a major role in autism spectrum disorders, they also believe that environmental factors conspire with genes to make certain children vulnerable. Researchers are still trying to figure out what those environmental factors are.

SOURCE: Archives of Pediatrics & Adolescent Medicine, October

Neurological disorder affects girls’ ability to communicate, move

By ELLYN COUVILLION
Nov 4, 2009

Blue-eyed, with a round face and soft blonde hair, 3-year-old Alyssa Chance smiles sweetly at the adults around her, rewarding their attention with an affectionate look in her eyes.

Her small hands clasp and unclasp each other constantly.

Alyssa’s mother, Donna Chance, knows that the time may come when Alyssa may not be able to use her hands and when she may lose the ability to say the few things she says now — “Mama,” “Papa,” “I love Paw Paw.”

The Chance family fights against that day with regular physical, occupational and speech therapy for Alyssa.

Alyssa has Rett syndrome, a devastating neurological developmental disorder that occurs almost exclusively in girls, according to the International Rett Syndrome Foundation.

Read Full Story...

Miles For Mary Claire

By Andrew Williams

October is Rett Syndrome Awareness Month, and a group of Petal residents will be capping it off Saturday with Miles for Mary Claire, a 5K walk/run community campaign to raise funds and awareness of the unique developmental disorder that is first recognized in infancy, almost always in girls.

The effort was created to honor Mary Claire Lee, a nine-year-old Petal resident living with the neurological disorder which affects brain function related to learning, speech, senses, mood, movement, breathing and cardiac function, as well as chewing, swallowing and digestion.

The condition is often mistaken for autism, cerebral palsy or a non-specific development delay, and an infant with Rett Syndrome usually has normal development for the first six to 18 months.

Miles for Mary Claire culminates Saturday with a 5K walk/run, held in conjunction with the Petal YMCA’s sixth annual Halloween Hustle, which will help raise money and awareness of Rett Syndrome.

Participants can find sponsors, make donations or simply run or walk in Mary Claire’s honor. All proceeds from the event will go to the International Rett Syndrome Foundation (IRSF), whose mission is to fund research for treatments and a cure.

Jodie Lee, Mary Claire’s mother and a fitness instructor at the Petal Y, came up with the idea after running her first marathon last year.

“I ran the first 5K the Y held, which is how I started running,” Lee said. “Then, last December, I ran my first marathon and decided I wanted to run one in honor of Mary Claire.”

Lee then signed up for a marathon in Chicago, which she ran on October 11th.

“There were about 40,000 people there raising money for different causes, and over the years I’ve met so many people who want to help with raising money or awareness for Rett Syndrome,” she said. “And I thought, ‘why can’t we do a 5K in Petal?’ and God led me to Miles for Mary Claire.”

While Mary Claire’s mother was developing the idea for Miles for Mary Claire, her grandmother, Diane Lee, was busy urging Gov. Haley Barbour to help by declaring October as Rett Syndrome Awareness Month.

Diane Lee became Mississippi’s representative for the IRSF, and after attending a conference, began a letter-writing campaign to catch the governor’s attention.

“Mississippi has never had anyone step up, but she decided she would fulfill that role,” Jodie Lee said.

Earlier this month, all the hard work paid off when Gov. Barbour met with Mary Claire’s family, as well as others who have children with Rett Syndrome, and signed a proclamation.

Lee said she hopes to be able to run Saturday, but may not be back in time, as Mary Claire has an appointment at the Children’s Hospital in Birmingham, Ala. Lee said Mary Claire has recently begun having seizures, and Friday was the only day available to schedule an evaluation.

Regardless, Miles for Marie Claire should be a success, as about 60 people are expected to participate, according to Ann Culpepper of the Petal Y.

Among the participants running in Marie Claire’s honor are the entire Petal High School fast-pitch softball team and their coach, Meg Barnes.

Culpepper said it is a pleasure to be able to help with the Miles for Marie Claire effort.

“(Jodie) is such an awesome instructor and thought she’s had a lot of challenges in her life, she is always such a positive, uplifting person,” Culpepper said. “This is our way to give back to her and help raise awareness of some of the challenges Mary Claire deals with every day.”

While the deadline to participate in the 5K has passed, it is not too late to get involved. Other ways to contribute include ordering a T-shirt for $15 or making an online donation. To order a T-shirt, contact Diane Lee at 582-5100 or via email at danddlee@aol.com.

To make a donation, visit www.rettsyndrome.org , click on Care or Cure and add that your donation is in honor of Mary Claire.

“As a close-knit community that fosters family support, community involvement and genuinely caring for its children, we see this partnership with the Petal community and IRSF as an ideal match,” Diane Lee said in a prepared statement.

“Our community’s generosity with the Miles for Mary Claire campaign will go a long way toward raising awareness of Rett Syndrome and providing funds for research that will benefit families living with Rett Syndrome.”

The campaign is likely to have added benefits for those who participate, much in the same way Jodie Lee first became motivated to run and make sure to maintain good health in order to care for Mary Claire.

“I don’t know if I would have ever started running if it weren’t for Mary Claire – she is such an inspiration,” Lee said. “We are overwhelmed and thankful to have all this support.”

IRSF Family Conference

Announcing 26th Annual Conference Location

"Ain’t No Mountain High Enough"
Cheyenne Mountain Resort
Colorado Springs, CO
Memorial Day Weekend
May 28-31, 2010
Mark your calendars – make your plan!


Who: Every person touched by Rett syndrome - parents, caregivers, professionals.
Why: Invest in yourself – one of the best things you can do for the child or adult in your life with RTT is to educate yourself about the syndrome and the pathways to treatments and a cure.
What: Knowledgeable, respected Rett experts brought together under one roof, for one weekend, dozens of unique sessions – all for you! Unparalleled sessions on research progress, communication, education, life planning issues, medical care, fundraising how-to workshops, marriage/family strengthening workshops, exhibitors and hands-on demos. And the most priceless gift of all: building community, friendship and learning from each other.

Registration will open online January 2010.

Conference Financial Planning Tip:

• Some company Flexible Spending Accounts (FSAs) will reimburse for registration fees, and possibly travel expenses, for education conferences on a diagnosed medical condition with a doctor’s prescription. Most 2010 Benefits and FSA enrollment periods open soon – see if you can take advantage of this opportunity by calling your company’s benefits administration department today!

Event Calendar

“The seat of knowledge is in the head, of wisdom, in the heart.”

~ William Hazlitt

Note:
Please send ALL mail to 4600 Devitt Drive Cincinnati, OH 45246.

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