Glut1 Deficiency Foundation

giving help and hope to the Glut1 Deficiency community as we work together for a cure

Newsletter

March 2011 vol 1

Glut1 Deficiency Foundation

Mission: The Glut1 Deficiency Foundation is a volunteer, non-profit family organization dedicated to:
* educating others about Glut1 Deficiency by creating a forum for sharing support, experiences, resources, and information between patients, families, and healthcare professionals.

We are happy to report that papers are in the process of being filed for our very own non-profit parent organization - Glut1 Deficiency Foundation. We have been working hard at making preparations and finalizing the documents in order to be recognized as an official 501(c)(3) organization. You can find our mission statement and list of officers at left. Our headquarters will be in Indianapolis, Indiana. One of the first, and most difficult, tasks we faced was choosing a name for our group. After much careful consideration, we settled on Glut1 Deficiency Foundation. There are a number of names in a variety of formats for the condition formally known as Glucose Transporter Type 1 Deficiency Syndrome. We chose a name that is hopefully shorter and easier than some of the others, but yet one that also includes the most relevant terms. We also felt a precedent for using this term had been set in a majority of the published articles and reports, hopefully aiding internet searches. We will be transitioning in the next few weeks to a new web address: www.g1dfoundation.org. The current address, www.glut1ds.org, will be set up to automatically forward to the new one, so hopefully the change will not cause problems for anyone. We hope to continue to build, improve, and enhance our website as an important tool in accomplishing our mission. We are also currently working on tweaking our logo to better match our new name and web address, so watch for those changes to come as well. You can find us on Facebook:
Glut1 Deficiency Foundation

* increasing awareness of and advocacy for Glut1

Deficiency. * supporting and funding researchers as they work for a cure.

Founding Officers and Board Members:

President: Glenna Steele - mom to Macie
Owingsville, Kentucky gsteele@g1dfoundation.org

Vice-President: Lloyd Holleman - dad to Chris

Carmel, Indiana lholleman@g1foundation.org

Secretary: Greg Stoddard - dad to Dalton

Evansville, Indiana gstoddard@g1dfoundation.org

We anticipate naming an Advisory Board in the near future. We aim to make this professional board representative of all groups who are working to help our children. One of our first projects, aside from the conference, will be to work on creating Glut1 Deficiency literature in an easy format for sharing. It will be for use by both families and healthcare professionals. We are thrilled to finally be making this organization a reality. We are ready to get to work doing all we can, with the help and support of each of you, to accomplish our mission. It is so exciting to think about the things that are possible when we all work together!

Treasurer: Jen Lazar - mom to Sam

Frisco, Texas jlazar@g1dfoundation.org

Assistant Officer: Keri Meyers - mom to Katie

Denham Springs, Louisiana kmeyers@g1dfoundation.org

Thank You!

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Glut1 Deficiency Foundation

Newsletter
March 2011
2011 Glut1 Deficiency Conference July 14-15 New Orleans, LA
Registration is now underway for our 2011 family conference, being held in New Orleans and hosted by the Meyers family. Teams of presenters from both Columbia University Medical Center (Dr. Darryl DeVivo) and University of Texas Southwestern Medical Center (Dr. Juan Pascual) will be sharing information and updates.

Help Wanted
Keri Meyers is working on a project for the conference as a way to celebrate the accomplishments of our children. If you have any success stories to share (great or small), please email them to her along with any photos. cure4katie@yahoo.com or kmeyers@g1dfoundation.org

Presentation Topics
(schedule and official agenda coming soon)
New testing methods for the diagnosis of Glut1 Deficiency Update on Seizure Treatment and Glut1 Deficiency Associated difficulties such as learning and formal education, anxiety, compulsions, self-image, depression, employment, and/or transitioning to adult medical care Genetic Mutations and Gene Therapy for Glut1 Deficiency Neuropsychological and behavioral studies that will be part of the C7 study Glut1 Deficiency Foundation updates

Conference Samples
Anna Williams has volunteered to take on the task of arranging samples for the conference attendees. If there is a particular product youd like to recommend, please send along the product name and company information to Anna Williams at: anna@jwillpower.com

We will also have an Ask the Doctor session where the doctors will answer questions from members in the audience. If you wish, you can provide those questions ahead of time to Jason.meyers@la.gov. Childrens activities will be provided during the conference sessions. Remember, to get the conference rate at the hotel, you have to register under our group. Here is a link to the webpage: http://hamptoninn.hilton.com/en/hp/groups/personalized/M/MSYLAHXGLU-20110714/index.jhtml?WT.mc_id=POG

Hampton Inn and Suites-Convention Center 1201 Convention Center Blvd. New Orleans, Louisiana
A conference registration form is included in the newsletter. Please continue to check our website for additional updates and details as planning moves along. You will also find links to travel information in NOLA.

Yahoo Support Group

If you are not currently a member, please consider joining the Yahoo Health Glut 1 Group. It is a wonderful way to communicate with and learn from other Glut 1 families from around the world.
http://health.groups.yahoo.com/group/ GLUT1DS/

www.glut1ds.org

in the news .... please check out these stories on some of our wonderful children:
Matt Rizzo: http://www.fleetfeetchicago.com/running-changes-everything-monthly-story-pages-167.php Bobby Allen: http://www.youtube.com/watch?v=_hKgad5oXRs
http://www.bostonherald.com/news/regional/view/2011_0222kin_seek_to_shed_light_on_rare_disease/srvc=home&position=1

Drew Hemlock (a brand new uncle!): http://www.wane.com/dpp/sports/local_sports/challenger-basketball-league-february-20

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Glut1 Deficiency Foundation

Newsletter
March 2011

stay connected!
Glut1 Deficiency Contact List
We are creating a contact list as a tool to find other families who live near you or who have children near the same age as yours. It will also be shared with doctors who might request contact information for Glut1 families. In addition, we feel it will be a good foundation or starting place for contacts for the patient registry we hope to help create.
It will serve as the mailing list for the Glut1 Deficiency Foundation andit will not be shared with anyone outside of the Glut1 community. If you would like to be added to the contact list and receive a copy, please send the following information to gsteele@g1dfoundation.org

Family Directory Books

A biography book has been created from the individual stories of our GLUT1 Deficiency children. Thank you to the families who participated and to the many families desiring to be added. Together we will be successful in providing solace to families and enlightenment to the medical community yet to discover the child with Glut1 Deficiency. We hope these stories bring smiles to your faces and add warmth to your hearts, for they are indeed a glimpse of exceptional families and amazing children. We hope youll consider submitting your childs story, as these books will serve as a valuable tool for researchers and families alike. If youd like to participate and receive a digital copy, please include the following information and e-mail to kmeyers@g1dfoundation.org.
* GLUT1 child's name and age along with a photo * family member names along with a family photo * location *a short biography of your child's journey in the world of GLUT1 ds
(in the neighborhood of 300-500 words)

name (mother and father if you like) * address (at least city/state/country) * email address * Glut1 Deficiency childs name and year of birth
*

Thank You!
*88 contacts to date!
If at any time you would like to remove your name from the contact list or the mailing list, please send an email request to the address above.

Hard copies were given to families and presenters in Louisville last year, and plans are to update those books this year in New Orleans. *27 childrens stories to date!

Thank You!

Newsletter Submissions
We hope to make this a quarterly newsletter. If you have items or information to submit, or ideas or suggestions for inclusion in future issues, please email to: gsteele@g1dfoundation.org

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Glut1 Deficiency Foundation

Newsletter
March 2011 vol 1

See what we can do together!

2009 Conference - Chicago 2010 Conference - Louisville

fundraising campaign led by the Meyers Family for a C7 oil clinical trial study to be directed by Dr. Juan Pascual at UT Southwestern $25,000 donation www.colleengiblinfound.org Glut 1 Deficiency Syndrome was discovered by Dr Darryl De Vivo at Columbia University Medical Center in 1991 with grant support from the Colleen Giblin Foundation. The Colleen Giblin Laboratories have been continuously supported by the Foundation since 1985. Glut 1 Research in the Laboratories at Columbia continues to the present time with a focus on mechanisms of disease and therapeutic interventions. More than 150 patients have been identified by the Giblin Laboratories since 1991, and many physician-scientists developed their first interest in this condition during their early research training in the Giblin Laboratories at Columbia. Milestones for Children is a fund-raising affiliate of the Colleen Giblin Foundation based in Massachusetts. Both organizations are dedicated to finding a cure for Glut 1 Deficiency.

in cooperation with

The Child Brain Foundation strives to advance the knowledge and treatment of pediatric neurological research. The cornerstone of the Child Brain Foundation is the provision of funding and support of just-in-time concepts and research projects that will result in scientific and medical paradigm changes and better treatment for an understudied and underserved sector of the worlds population: our infants and children, who are the hope for the future. For more information please visit: www.childbrainfoundation.org

www.milestonesforchildren.org

The Charlie Foundation

dedicated to helping families make the most of dietary therapies to treat epilepsy and Glut 1 Deficiency
for more information, please visit:

Annual Fundraising Events

to benefit Glut1 DS research

Tour for the Cure

outdoor concert
hosted September 2010

www.charliefoundation.org

2011 Event - September - more details to follow

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Glut1 Deficiency Foundation

Newsletter
March 2011 vol 1

Fundraising Families
The Meyers Family
Have you ever heard of the Warrior Dash? It's a crazy 3 mile race with various obstacles designed only for Warriors at heart. Warriors come from all over dressed in crazy fashions to participate in this race. I found out the race was coming to Louisiana and in exchange for 25 volunteers to assist with race day activities for half about 6 hours, they will donate $1,000 to a charity of your choice. We jumped on this easy and fun opportunity to raise money for Glut 1. On March 5, 2011 Jason and I along with 26 other volunteers took off to Norco, LA (a small city outside of New Orleans) for the race. We were assigned to the beer booth and having a blast, but unfortunately the weather was not cooperating. By noon, the weather had gotten so bad they cancelled the remaining races for the day and started to evacuate the large crowd. This race is designed for 500 people to run the obstacle course ever 30 minutes, so at this time thousands of people were trying to evacuate at once. To complicate matters further, the parking area was about 1.5 miles away and we were brought to the race area in school buses. The buses were now overwhelmed trying to haul this large group of people back at once. We were released shortly afterward but before we could get to the road to wait in the line for the buses in the pouring rain, we were told to take shelter in a ditch because a tornado was spotted touching down across the street (near the parking area). Chills ran up my spine when I heard the emergency sirens going off. We eventually took shelter in a Shell gas station across the street with approximately 200 other Warrior Dashers. It was a very hairy moment for all. I'm glad to announce no one was hurt and we have received the check for $1,000 for Glut 1 as promised. It was a day none of us will forget and if the event ever comes back to Louisiana we will definitely gather our volunteers together and participate again. However, next time the plan is to volunteer for the morning shift and run the race in the afternoon. This is a great easy fun way to raise money for our children and I'm glad I had the opportunity to be a part of the event. Oh, and if you are wondering if we actually participated in the race itself, well I did. I returned the next day with two other volunteers and ran the race. Since I'm not in shape, I'm not sure if "ran" is the correct term, but I survived! For more information on volunteering contact Kendall at kendall@redfrogevents.comevents.com or visit www.warriordash.com

Last year our daughter Tessa was diagnosed with GLUT1 in April and in June we held a very successful fundraiser. I began by developing a letter which detailed Tessa's story and describing Glut1. Over the course of two weekends I canvased restaurants, stores, area attractions, etc. asking for a donation for our fundraiser. I then asked a local winery if they would donate their room for us to hold a raffle. We also began to receive offers of baskets to raffle off. We decided to pool the store, restaurant, etc. gift certificates into two large first & second prizes that could be sold before the event, and had the baskets available for raffle at the event. We had a large turnout at the actual drawing, but I think it really helped to pre-sell tickets to people that could not come to the drawing. We are planning to do something similar this year, but possibly making the first prize a 4 hour limo ride of wineries in our area, with free wine tastings. My next step is to convince a limo company & wineries to donate! If you think you would like to do something similar and have any questions or need more details, please don't hesitate to e-mail me at: aprilbreen@yahoo.com. - April, Gary & Tessa Breen

The Breen Family

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Newsletter

Glut1 Deficiency Foundation

March 2011 vol 1

Fundraising Families

The Romero Family

Trysta's grandma made a quilt and they sold raffle tickets for it plus her church did a burger bash!
Seventh Ward Elementary held its annual Mardi Gras Parade on Friday, the Krewe of Hats which rolled in honor of Katie Meyers, one of the schools kindergarten students - shown handing out beads. Katie was diagnosed with Glut1 Deficiency. Students were allowed to wear a Mardi Gras shirt with a donation to the Glut1 Deficiency Foundation, an organization searching for a cure for this rare genetic metabolic disorder.

The Halsey Family

BBQ
Barbecue Plates To Go $8.00 Pick-up or delivery Saturday, May 1, 2010 11 a.m. to 3 p.m.
Pick-up location: 1909 S 45th St, Temple, TX 76504

The Romeros have hosted two Glut1 Deficiency fundraisers in Houston.

Fundraiser
Research is going on to understand this treatable disease and to provide novel therapies for GLUT1 DS patients in the future. Your gracious assistance, through the purchase of these barbecue dinners, will directly support continued research of those diligently working to provide treatment discoveries, and ultimately a cure, for children like Jadyn Romero. Jadyn is a happy, funloving four-yearold boy who was diagnosed with this rare condition at age two, after a full year of research and dozens of specialists. We will attend the Second Annual
http://www.Glut1DS.org

Brisket Chicken Sausage Potato Salad BBQ Beans Bread Fixins Desserts
All proceeds benet Glucose Transporter Deciency Syndrome (GLUT1 DS) research
Glucose Transporter De ciency Syndrome (GLUT1 DS) is a rare genetic condition a ecting brain-energy metabolism. Glucose is the essential fuel for brain metabolism. A defect in the GLUT1-transporter at the blood-brain barrier results in insu cient glucose transfer which results in an energy crisis in the brain. Children with this condition begin having seizures in early infancy and their development is mildly-to-severely delayed. Diagnosis is often misdiagnosed and, without treatment, developmental outcome and seizure control continue to deteriorate. The only known treatment the ketogenic diet provides ketones as an alternative fuel to restore brain-energy metabolism. Most patients become seizure-free on the diet, and motor and mental development improve. GLUT1 DS Conference in Louisville, Kentucky from July 15-17, 2010. For more information about the conference, or Glut1 DS, visit:

Feel free to contact us directly for more information about Jadyns story and our long journey. Were happy to share because every moment counts. Help us spread the word about GLUT1 DS. MARC AND MELISSA ROMERO

melissaromero@att.net

Tax-deductible donations for the conference can be made to: The Child Brain Foundation c/o Glut1 DS Conference 5930 Royal Lane, #231 Dallas, Texas 75230

Call early to reserve your plates! A variety of homemade baked goods will also be available.

The Steele Family

Macie

2nd Annual

Run for Glut1

June 11, 2011
www.runforglut1.info

Fun for Glut1

food, fun, and games at the Steele home May 2010

Golf for Glut1

golf scramble May 2010

2011 Glut 1 DS Family Registration Form

July 14-15, 2011 Hampton Inn and Suites-Convention Center 1201 Convention Center Blvd. New Orleans, Louisiana

Registration Fees:
Adults: Now- March 15 Mar 15- June 1 June 1-July 1 July 1 July 15 $90.00 $110.00 $125.00 $150.00 Non glut1 children: free $10.00/child $20.00/child $30.00/child

Fundraising Incentives:
$200 $400 $1,000 $1,500 $2,000 1 adult registration free 2 adult registrations free 2 adult reg and 1 night in the hotel 2 adult reg and 2 nights in the hotel 2 adult reg and 3 nights in the hotel

Family members attending

Adult: Adult: Adult: Adult: Name for badge: Name for badge: Name for badge: Name for badge: Relation to glut1 child: Relation to glut1 child: Relation to glut1 child: Relation to glut1 child:

Childrens Names and Ages GLUT1 Child Sibling: Sibling: Age Age Age _____ Sibling: Sibling: ______ Age Age

Family Address: e-mail address:

Total # of Adults ___ X $ ____ = $ ___ Adult total

(Registration Fee)

Total # of Children ___X $ ____ = $ ____ Child total

(Registration Fee)

Total enclosed

Mail Registration Forms and Payments to: Jason Meyers, 22657 Joe May Road, Denham Springs, LA 70726