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Glut1 Deficiency Foundationgiving help and hope to the Glut1 Deficiency community as we work together for a cureNewsletterMarch 2011 vol 1Glut1 Deficiency FoundationMission: 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
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Newsletter March 2011 vol 1
Glut1 Deficiency Foundation
Glut1 Deficiency FoundationMission:
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.
* 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
Vice-President: Lloyd Holleman - dad to Chris
Carmel, Indiana
Secretary: Greg Stoddard - dad to Dalton
Evansville, Indiana
Treasurer: Jen Lazar - mom to Sam
Frisco, Texas
Assistant Officer: Keri Meyers - mom to Katie
Denham Springs, Louisiana
giving help and hope to the Glut1 Deficiency community as we work together for a cure
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
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!
Thank You!
page 2
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.
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
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 [email protected].
Children’s 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/MSYLAHX-
GLU-20110714/index.jhtml?WT.mc_id=POG
Hampton Inn and Suites-Convention Center1201 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.
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
Help WantedKeri 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.
Yahoo Support GroupIf 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/
Glut1 Deficiency Foundation Newsletter March 2011
Conference SamplesAnna Williams has volunteered to
take on the task of arranging samples for the conference
attendees. If there is a particular product you’d like to recommend,
please send along the product name and company information to
Anna Williams at:
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
and it 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
* name (mother and father if you like)* address (at least city/state/country)* email address* Glut1 Deficiency child’s 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.
Glut1 Deficiency Foundation Newsletter March 2011
page 3
stay connected!
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 you’ll consider submitting your child’s
story, as these books will serve as a valuable tool for researchers and families alike. If you’d
like to participate andreceive a digital copy, please include the
following information and e-mail [email protected].
* 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)
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 children’s stories to date!
Thank You!
Newsletter SubmissionsWe 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:
Glut1 Deficiency Foundation Newsletter March 2011 vol 1
See what we can do together!
page 4
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
2010 Conference - Louisville2009 Conference - Chicago
in cooperation with
The Charlie Foundationdedicated to helping families make the
most of dietary therapies to treat
epilepsy and Glut 1 Deficiency
for more information, please visit:
www.charliefoundation.org
Annual Fundraising Events
Tour for the Cure
hosted September 2010
2011 Event -
to benefit Glut1 DS research
outdoor concert
September - more details to follow
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 ofjust-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 world’s population:
our infants and children, who are the hope for the future. For more information please visit:
www.childbrainfoundation.org
www.milestonesforchildren.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.
www.colleengiblinfound.org
Glut1 Deficiency Foundation Newsletter March 2011 vol 1
page 5
Fundraising Families
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 [email protected] 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: [email protected].
- April, Gary & Tessa Breen
The Meyers Family
The Breen Family
Fundraising Families Newsletter March 2011 vol 1 Glut1 Deficiency Foundation
page 6
2nd Annual
Run for Glut1June 11, 2011
www.runforglut1.info
Macie
The Romero Family The Romeros have hosted two Glut1
Deficiency fundraisers in Houston.
Barbecue Plates To Go — $8.00 — Pick-up or deliverySaturday, May 1, 2010 — 11 a.m. to 3 p.m.
Barbecue Plates To Go — $8.00 — Pick-up or deliverySaturday, May 1, 2010 — 11 a.m. to 3 p.m.
Pick-up location: 1909 S 45th St, Temple, TX 76504
Brisket • Chicken • Sausage • Potato Salad • BBQ Beans • Bread • Fixin’s • DessertsAll proceeds benefit Glucose Transporter Deficiency Syndrome (GLUT1 DS) research
BBQFundraiserBBQFundraiser
Glucose Transporter De!ciency Syndrome(GLUT1 DS) is a rare genetic condition a"ect -ing brain-energy metabolism. Glucose is theessential fuel for brain met abolism. A defectin the GLUT1-transporter at the blood-brainbarrier results in insu#cient glucose trans-fer which results in an “energy crisis” in thebrain. Children with this condition beginhaving seizures in early infancy and theirdevelopment is mildly-to-severely delayed. Diagnosis is often misdiagnosed and, with-out treatment, developmental outcome andseizure control continue to deteriorate. Theonly known treatment – the ketogenic diet– provides ketones as an alternative fuel to restore brain-energy metabolism. Most patients become seizure-free on the diet, andmotor and mental development improve.
Research is going on to understand thistreatable disease and to provide novel ther-apies for GLUT1 DS patients in the future.
Your gracious assistance, through the purchase of these barbecue dinners, will directly support continued research of thosediligently working to provide treat ment discoveries, and ultimately a cure, for childrenlike Jadyn Romero. Jadyn is a happy, fun-loving four-year-old boy who wasdiagnosed with thisrare condition atage two, after a fullyear of research anddozens of special -ists. We will attendthe Second Annual
GLUT1 DS Conference in Louisville, Kentuckyfrom July 15-17, 2010. For more infor mationabout the conference, or Glut1 DS, visit:http://www.Glut1DS.org
Feel free to contact us directly for more
infor ma tion about Jadyn’s story and our
long journey. We’re happy to share because
every moment counts. Help us spread the
word about GLUT1 DS.
MARC AND MELISSA [email protected]
Tax-deductible donations for the conference can be made to:
The Child Brain Foundationc/o Glut1 DS Conference5930 Royal Lane, #231Dallas, Texas 75230
Call early to reserve your plates! A variety of homemade baked goods will also be available.
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 school’s 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 FamilyTrysta's
grandma made a quilt and they
sold raffle tickets for it plus her church did a burger bash!
Fun for Glut1food, fun, and games
at the Steele home
May 2010
Golf for Glut1 golf scramble
May 2010
The Steele Family
2011 Glut 1 DS Family Registration FormJuly 14-15, 2011
Hampton Inn and Suites-Convention Center1201 Convention Center Blvd.
New Orleans, Louisiana
Registration Fees: Adults: Non glut1 children: Now- March 15 $90.00 free Mar 15- June 1 $110.00 $10.00/child June 1-July 1 $125.00 $20.00/child July 1 – July 15 $150.00 $30.00/child
Fundraising Incentives: $200 1 adult registration free $400 2 adult registrations free $1,000 2 adult reg and 1 night in the hotel $1,500 2 adult reg and 2 nights in the hotel $2,000 2 adult reg and 3 nights in the hotel
Family members attendingAdult: Name for badge: Relation to glut1 child:
Adult: Name for badge: Relation to glut1 child:
Adult: Name for badge: Relation to glut1 child:
Adult: Name for badge: Relation to glut1 child:
Children’s Names and Ages
GLUT1 Child Age _____
Sibling: Age Sibling: Age
Sibling: Age Sibling: 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
