Friday, February 29, 2008

Virginia Historical societ y

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What is Rett Syndrome?

Rett syndrome is a neurological disorder caused by a genetic mutation of the MECP2 gene on the X chromosome. It is commonly misdiagnosed as autism or cerebral palsy and occurs almost exclu-sively in females.

Prevalence: Every five hours, a baby girl is born with Rett syndrome. This is roughly one in 10,000 female births.

Local Connection: Approximately seventy-five families in Virginia have a child living with Rett syndrome.

Indications: The child’s early development appears normal until six to eighteen months of age, when develop-ment begins to regress or stand still. Hand skills, coordination and speech are handicapped by the disorder. Tremors and seizures are a common symptom.

What is IRSF?The International Rett Syndrome Foundation (IRSF) is a not-for-profit 501(c)(3) organization dedicated to research, advocacy and family support. As the largest private source of funds for Rett syndrome research, IRSF leads the drive for medical progress. Julia Roberts is the co-chair of the Circle of Angels Research Fund, a fund earmarked for research grants by IRSF. IRSF organizes events throughout the year, including the IRSF Conference where caregivers of Rett syndrome children can expand their knowledge of the disorder. IRSF also lobbies on Capital Hill to get their message in front of Congress, and to increase the federal funding for neurodevel-opmental research and physician education. The Foundation keeps the world’s most comprehensive database of people with Rett syndrome, forming a support network and sending out current and use-ful information. Last summer, the Rett Syndrome Research Foundation and the International Rett Syndrome Association merged to form the IRSF.

Richmond has a direct link with

Rett syndrome. Not only are

children functioning with the

disorder in Richmond, but

others like Kathryn Kissam are dedicating their

lives to finding a cure.

Kathryn is the chairman

of the International Rett

Syndrome Foundation,

and sister to Dr. Carolyn

Schanen, one of the key

researchers instrumental

in discovering the mu-

tated gene that causes

Rett syndrome. “I spend

the vast majority of my

time pro bono working

on this cause. It is very

personal to me. It’s not

just a fundraiser. I want

to go to my grave having

made a difference in

cures and treatments,”

says Kathryn. She is mo-

tivated by the persever-

ance of two local young

ladies living with Rett

syndrome, Anna Cate

Rabke and Mary Grace

Holloway.

Anna Cate is a beautiful,

active and cheerful six-

year old. She is fortunate

that her form of Rett

syndrome is mild; she

is mobile and hasn’t ex-

perienced seizures like

others with the disorder.

Although her language

is limited, Anna Cate

was able to attend the

Faison School of Au-

tism, and now attends

a mainstream school where the challenges of her

condition are ably met. Anna Cate’s parents, Emilie

and Will Rabke, gained a positive perspective after

taking their daughter to see a doctor from Baylor

Medical School in Houston, Texas. Anna Cate was

gleefully running around the waiting room when

a parent of another little girl with Rett syndrome

told them Anna Cate was an inspiration for their

daughter. “We have days that are just plain rough

from a parenting perspective, but they are nothing

compared to the other

Rett syndrome parents

that would give their

lives to see their little

girl walk,” says Emilie.

Equally gifted is Mary

Grace Holloway. She is

also active and able to

communicate. Through

the support of her par-

ents, Debra and Ham-

ilton Holloway, Mary

Grace has learned to

converse using advanced

communication devices

and eye gazes. She par-

ticipates in hippothera-

py, physical therapy on

a horse where she is able

to strengthen her core

muscles. “I believe the

increased funding for

much-needed research

may one day help

change Mary Grace’s

future. It will also mean

that one day another

family we will never

know won’t face the

trials of Rett syndrome,”

comments Hamilton

Holloway.

These Richmonders

are making milestones.

The girls are learning

and working towards

personal goals, while

Kathryn Kissam and

families like the Rabkes and the Holloways are

raising funds for Rett syndrome research and

helping support other families that live with the

syndrome everyday.

The Richmond Connection

Anna Cate Rabke

Mary Grace Holloway

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Friday, February 29, 20087:00 P.M.

Cocktails, hors d’oeuvres and silent auction

7:45 P.M. Southwest dinner buffet and presentations

8:45 P.M. Live auction and Kevin Black performance

Tickets: $150 pair or $75 single Tickets available online at www.rettsyndrome.org

Saddle up for a festive evening of cowboy music and southwestern cuisine! Febru-ary twenty-ninth, The Virginia Historical Society will transform into a live music and auction house, complete with cocktails, hors d’oeuvres and a cowboy dinner. This event will raise funds to help find a cure for Rett syndrome. So raise your hands high during the live auction or bid discreetly in the silent portion! Fill up

on hearty dishes from Buz and Ned’s Real BBQ, Moe’s Southwestern Grill and Carlisle’s Culinary Connection Catering, but leave room for a little campfire music by Kevin Black, brother of acclaimed country music star, Clint Black.

The “Spending Time Ending Rett” evening is particularly meaningful for Kevin. His daughter Cortney lived with Rett syndrome for sixteen years, challenging him and his family to understand the disorder. Kevin is an avid supporter of IRSF, and uses his notoriety and compassion to organize an annual charity golf tournament in Cortney’s memory. He also performs for families and individuals living with Rett syndrome. IRSF is thankful for the support of Kevin, Clint and the Black Family.

A Year in the Limelight:

Rett syndrome gains national atten-tion as scientists close in on a cure.

Many Americans learned of Rett syndrome last month, when Angela Martin appeared on the

popular TV talent show, American Idol. She dedicated her performance to her daughter Jessica, who lives with Rett syndrome. “It’s not about fame,” Angela says, “It’s about get-ting [Jessica] the best care. I’m going to get that for her.” Angela’s determination is shared by scientists working to find a cure for Rett syndrome.

On February 8 2007, researchers made a discovery that has afforded hope to thou-sands of families living with Rett syndrome. A landmark study co-funded by IRSF, reversed the affects of Rett syndrome within mice models, determining that the disorder does not permanently affect nerve cells. Once re-searchers isolated the mutated gene (MECP2), and encouraged it to produce normal protein, the mice’s tremors stopped, their breathing returned to normal and they were cured of the disease. This was even possible in mice just days away from death. By establishing the principle of reversibility, the study offers great hope that Rett syndrome and other neurological dis-orders are curable. Wired Magazine reported “Laboratory Mice Cured of Rett syndrome” as one of “The Top 10 Scientif-ic Breakthroughs of 2007.” “It motivates us to get up every day,” says Kathryn Kissam, chairman of IRSF. This monu-mental breakthrough underscores the need for more research funds to forge the final path to treat-ments and a cure.

Kevin Black

Bring your honey

+ Bring your money

I want to tell you about a

neurological disorder called

Rett syndrome. You may not

have heard of Rett syndrome,

but it has affected countless

lives, including my own. All

it took was one smile from

Abigail and I wanted to help.

Rett syndrome becomes apparent after 6-18 months of early normal development,

most often in girls. It results in a regression that leads to severe lifelong handicaps in-

cluding loss of speech, hand use and mobility. There may be 200,000 girls and women

worldwide who have Rett syndrome. We hope to find them—to provide care, advocacy

and research that will make a difference.

To learn more or to see how you, too, can help call

1-800-818-RETT or visit our website at www.rettsyndrome.org

ReTT sYndRome

A message from

julia RobERTs about

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Amerigroup Foundation • Deloitte Kemin Industries • Land America

Marsh • New Market

CAterINg provIDeD by:Bear Creek Coffee • Buz & Ned’s

Carlisle’s Culinary Connection CateringThe Country Vintner • Moe’s Southwestern Grill

Live and Silent Auction Items Include:

Autographed Clint Black iconic hat

Autographed Guitar by Tim McGraw and Faith Hill

Isle of Palms, SC Vacation

Room Makeover with Custom Window Treatments

New Orleans Getaway

Fur Jacket and vest • premier Duck and Quail Hunts Sporting Memorabilia and tickets • Amazing Jewelry pieces

And many more wonderful items donated by Richmond’s leading retailers and service providers.

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The International Rett Syndrome

Foundation is grateful for the sponsors who made this night

possible. Thank you for your generosity.

The IRSF Needs Your

SupportIf you would like to buy tickets, volunteer your time or make a

charitable donation to help fund rett syndrome research, please call Kathryn Kissam at (804) 741-3687,

or visit www.rettsyndrome.org.