Triumph, Hope and Gratitude
Justin's TRIumph Over GAN August 2014

A Message of Triumph, Hope & Gratitude from Lagenia & Dave Clark

Update on Justin and Lexi Clark's GAN Disease Progression

Dear Friends,
 
First, we would like to thank everyone for your prayers for our family.  As you know, our lives have been turned upside down since Justin's diagnosis of Giant Axonal Neuropathy (GAN) in August of 2013.  Our children have been truly amazing in handling this crushing news.  Here is a recap of what has happened since my last email:
 

(Editors note: Since Lagenia and Dave's letter discusses how you have generously supported GAN research, the references to dollar amounts are spelled out, lacking the dollar sign or referred to with a "K" for thousands because email SPAM filters block emails which have many references to dollar amounts. To ensure you receive future emails, please add Justin_s_Triumph_Over_GAN@mail.vresp.com to your safe senders list.)

October 2013

We found out that Lexi (age 8) also has GAN and that Jared is a carrier of the disease. 
 

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November 2013

Jared (Justin's fraternal twin brother) completed a 1/2 Ironman distance race (1.2 mile swim, 56 mile bike and a 13.1 mile run) at age 12 (only the second 12 year old to ever race this distance). Lexi and Justin were able to run across the finish line with him. Jared used the race to raise money to help find a cure for GAN. Over 80-thousand was raised for Hannah's Hope Fund.
 

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December 2013: Jared and Justin turned 13

January 2014 

Our friend Aaron from church finished this video to help explain our disease and why we need money to find a cure. Please consider sharing this video with everyone on your email list. 

February 2014 

Justin was the guest speaker in front of more than 400 people at the Hannah's Hope Fund Ball in Albany, NY.  Over 165K was raised at this event.  Watch Justin's speech here

 
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April  2014 

We spent a week at the National Institutes of Health in Bethesda, Maryland, where Lexi and Justin were participants in the GAN Natural History Study (which basically means they ran lots and lots of tests on them). This study was necessary to establish baseline data on each patient so when a possible treatment is in clinical trials they will  be able to see if it works.

Needless to say, the kids were tired of being poked and prodded and having to undergo multiple MRIs without sedation! The tests basically just confirmed what the DNA sequence results had already indicated. Lexi and Justin both have neuropathy in their feet and legs but it is progressing slowly. The GOOD NEWS is that the doctors who have been studying GAN said our children are the least affected of any of the GAN patients they have seen, due to the type of mutation they have on the GAN gene.  

Team Justin's TRIumph raised over 35-thousand for Hannah's Hope Fund at the Kemah Triathlon and the Houston Kids Triathlon

May 2014   

On our 22nd wedding anniversary, Lexi asked me how old I was when we got married and I said "23", she said, "what if I don't live that long?" to which Justin replied, "Lexi, that's why Mom and Dad are working so hard to raise money to find a cure."

June 2014 

Justin gave his testimony as part of our Youth Musical both in Houston and on the mission trip to New Mexico. 

Lexi turned 9. 

Team Justin's TRIumph raised over 12-thousand for Hannah's Hope Fund at the Memorial Herman Sugar Land Triathlon (Lexi was a swimmer in an adult relay at the race).

The Bellaire Barracuda Summer Swim Team raised over 6-thousand for Hannah's Hope Fund through a team SwimAThon.

Justin went on a 3-week trip to Europe with People To People (one of our former neighbors sponsored him because he wanted him to be able to see Europe while he can still walk). Justin is a total history buff (specifically military history) and he got to visit 7 countries and Normandy beach while he was there.

The FDA gave approval for the start of a GAN gene delivery clinical trial .  100% of this work was funded by Hannah’s Hope Fund for GAN.  We anticipate the study will start in the fall of 2014 after we receive Institutional Review Board approval.  Lexi and Justin are not eligible for Phase I, which is scheduled to last 2 years.

July 2014           

Emily's 30th Birthday Spin-a-thon for GAN and Cabi Sale for GAN

August 2014 

Cypress Triathlon – Team Justin’ s TRIumph raised  over 9-thousand
 
Thanks to your generous support, Justin’s TRIumph has raised over 167-thousand for Hannah’s Hope Fund for GAN so far! We're keeping the momentum going for the rest of 2014 and are already planning for 2015.

Here is a list of all of our upcoming events. We would love for you to get involved or attend these. If you are not in Houston and cannot attend these events, consider sharing some of our story on your social media pages. The more people who become aware of our efforts, the better. 

Upcoming Events

To purchase tickets for any of these events, please visit the Events page on our web site.

 
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Upcoming Race Events

Kemah_Team_JT Labor Day Weekend - Team Justin’s TRIumph is participating in Towne Lake Triathlon.  Join the team here.   If you don’t want to race, but would like to sponsor Jared as he races to raise money to find a cure for GAN, you may make a tax deductible donation here.

November 27, 2014 - Sugar Land Turkey TrotLots of distances available for this race, a 5 mile, a 2.8 family walk and a 1 mile kids race.  Bring the whole family to start your Thanksgiving Celebration.  Join our team here
 
Join the 2015 Houston Marathon here.

If you are doing a race and would like to race for Team Justin’s TRIumph, please email JustinsTRIumph@comcast.net and we will create a team page for your race.

We will have a team for the 2015 Boston Marathon!

 

We know we asked you to make a donation to Hannah’s Hope Fund in 2013, and now we are asking you to consider making another donation in 2014 (it is a new tax year after all….).
 

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Although we have conditional approval to start what we hope will halt the progression of GAN, we still need to continue to raise money for the following reasons:
 
1) Based on the type of GAN gene defect, some patients need an immune tolerance protocol to ensure their immune system doesn't see the full-length GAN gene as foreign when delivered with a gene vector.  Another 130K is needed for these studies that cost 607K in total.
 
2) In theory, gene therapy is considered to be a one-time treatment.  However, longevity studies must be carried out several years to determine if patients will need subsequent injections. Cost: 200K
 
3) More efficient gene therapy vectors continue to be developed, vectors that treat more cells with a healthy copy of a gene.  HHF will need to conduct bridging studies to obtain safety data in order to convert to next generation vectors when they become available. Cost: 200K
 
4) The initial GAN gene delivery is targeting the central nervous system only.  GAN is a disease of every nerve cell in the body.  HHF is also working on approaches to treat the peripheral nerves. This works costs 175K a year.  HHF is raising funds so that this work can continue beyond October of 2015, the time period with budgeted funds already raised.
 
5) Once a drug compound is discovered that works for GAN, it will very likely work for other disorders that also have intermediate filament aggregates as a hallmark of disease pathology.  The goal is to conduct proof-of-concept studies in cellular models of related diseases to see if the drug has broader reach, impacting indications other than just GAN. If so, we will finally be able to pique the interest of pharmaceutical companies, due to larger patient population to market the drug to. HHF will then work to partner with industry to finance the drug development program through to commercialization. Each proof of concept study will cost about 90K and we will likely need to conduct 4 studies in order to collect enough data to convince industry the drug has broader reach before they will agree to invest to develop the drug through preclinical safety studies, and expensive human clinical trials.  Total: 360K.
 
6) GAN gene sequencing for patients suspected to have GAN: 10K/yr.  Unfortunately, insurance companies rarely cover this. Morally, getting patients properly diagnosed is the right thing to do.  The more GAN patients we find, the more likely we are to attract the attention of Pharmaceutical companies once we discover a drug compound that our scientists feel will treat GAN.
 
Thanks for helping save our children’s lives. 
Lagenia and Dave Clark

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