Wednesday, October 3, 2012

The GAN Warriors are the donation recipient for the 2012" My Kids Closet" Fall Sale!!
How this works, is at the checkout stand each customer will be asked if they would like to make a donation. When a donation is made, the cashier will place a heart on the wall behind the checkout stands.
Through out the sale, there will be a recording playing that will give information about the boys and the cure we are trying to raise money for. This is wonderful exposure for awareness and a great opportunity to raise some money to keep that thermometer going up!! We will be selling tickets for an amazing raffle basket... $1 will get you a chance at jewelry, cd's, a restaurant gift certificate, Beauty Salon gift certificate, a stuffed balloon and much more. Combined value is over $400!

Thank you so much" My Kids Closet" for choosing GAN Warriors to help this year.
The sale is open to the public on Saturday, Oct. 6th from 8-3 and Sunday, Oct. 7th from 10-2. ( Sunday is 50% off all items with a star above the price) The location is at the First Interstate Building at the Ravalli County Fairgrounds.
Come on out and support a great cause!

On Friday, Oct. 5th, Hannah and Ali will be on Radio station 1240 AM talking about GAN  and then My Kids Closet consignment sale. They will be on the 8:00 to 9:00 a.m events hour. Spread the word to your family and friends to listen in!


                       

Friday, September 7, 2012

Fundraising in the Root and beyond!

So many hands have been very busy raising awareness and money to help us reach our goal. Check out the thermometer on the right! Yes that's right, it really does say $51,084.86! So exciting to see it keep on going up.
Before I share the details as to how money is being raised, we would like to thank everyone for their time, talents and donations. Without all of that, none of this would be possible. Without YOU, getting to our goal would take longer, and time is NOT a friend of GAN.

So here is how some of it has happened so far:

This awesome lemonade stand was built and donated for us to take to the Farmers Market.We handed out free lemonade and flyer's with information about the boys and a donation envelope if they felt inclined to send in a check. We met a lot of great people and felt like we raised good awareness. A few hundred dollars was put in the donation can and donation checks were mailed in.

Rocky Mountain Grange donated their building and a village of people put on an incredible yard sale. Great items were donated and it took many hands to sort, haul and price everything. It was very worth the effort though because the sale raised just under 5,000.00. Great job to everyone who helped make that a huge success.



Thank you Rocky Mountain Grange for donating your building.
People came to our booth at the Ravalli County fair and tried to win $100 or bought a GAN Warriors t-shirt or GAN bracelet. We also had a raffle for a cord of wood that was so generously donated. The grand total for that event was 2,719.00.



The event that knocked it out of the park was the 5k ,held in Jason's hometown in Utah. Over 600 people showed up to support this cause and the total for that event and their change drive for July was.... 26,011.45!!!!!!!! Astounding and Awe inspiring.Way to go Utah! These pictures tell a thousand words.





Look at all that change.


Grateful parents.












Fundraising is going on in Arizona and this event below is happening tonight! So incredible. Keep up the good work!                                                                                                                                   
                                                  

Friday, August 24, 2012

Pizza anyone??

PIZZA, PIZZA, PIZZA!! We are selling Pizza Hut cards to help us reach our goal. The cost for the cards is $12 and that gets you one large, 3 topping or specialty pizza. That is a $12 to $14 value. With each pizza sold, GAN Warriors gets $5 of it!!!
Breadstick cards are also available for $5 and that is a .99 cent savings to you AND a portion of that also goes towards our goal. Cards may be purchased at the Bulk -n- Bin or the Pines Academy school office. You can also message us and we will make sure we get you your card. Think about these boys before you go buy pizza and remember, if you use a card, you are helping with the cure that could save their lives! Thank you PIZZA HUT for joining our cause.

Friday, July 27, 2012

2012 Missoula Marathon

Sunday, July 8th 2012 was a big day for our GAN Warriors! We had some very amazing people running in the Missoula Marathon to support our cause. Collin Fehr was one of the runners and he WON the Marathon! We are very excited for Collin. He put in a lot of training and we appreciate the fact that he ran for GAN. Because he won, he was interviewed by the media and was able to give a brief explanation of whom he was running for and why. Thank You so much Collin!

Also running in the Marathon for our Warriors was Cindy Jessop-Thomas. If you go to this link here http://www.youtube.com/watch?v=pj2Rodd4d2c and move the time to 2:57:53 you will get to see Cindy run across the finish line.... but she is running across that line with Levi, Alan and Aaron. Levi has always wanted to be a runner, like his Dad, and he got his chance to run in a Marathon! Watching him run as fast as he can, pushing his walker, is a sight you will most likely not ever forget. Thank you Cindy for helping them have that opportunity.

In the relay event for the marathon, Colby Henderson, Quentin Porter, Chris Jessop, Chase Stoker and Emmett Stoker ran for GAN Warriors too. These young men have trained hard for these events and we appreciate so much their willingness to run for these sweet boys and raise awareness of their illness. Thank you so much Colby, Quentin,Chris, Chase and Emmett!

The Marathon provided even more publicity and awareness for this great cause and we appreciate all the support and welcome all of our new supporters also.
 Together we will do our best to give Levi, Alan and Aaron a chance at life.
The running crew with Levi, Alan and Aaron.


Watching the other runners.


Go Levi!

Running to the finish line.

Cleaning up after Aaron threw up. One of the symptoms of GAN.

Friday, June 29, 2012

Just to make you smile!

This is Aaron singing the ABC song! He is always full of smiles and you can't help but be happy when he is around.

video

Thursday, June 21, 2012

Help change lives! Please watch the video at the end.

The Lonely, Suffering Kids


Jimmy
By Jimmy Reilly
Posted Jun 19, 2012 in Health
Comm

Imagine waking up one day, and discovering that there is something terribly wrong. Your child is being attacked, but you have no idea what is invading your life.
Your parental instincts take over. They've always served you well in the past. A case of the sniffles, no problem. An upset tummy, easily remedied. Kiss a boo-boo and it's all better. A little TLC always goes a long way.
But on this day, all the love in the world is doing no good. It's every parent's nightmare. "I can't help my child."
The attacker moves slowly at first. A few stumbles, a couple of falls maybe. You watch your child begin to lose his abilities: the ability to run, to ride a bike. The very essence of childhood is the joy of playtime, and this assailant is sapping that joy in a very slow and steady onslaught. The spirit of a child allows him to be resilient, to bounce back, but this evil is very powerful.
This evil is something called GAN, short for Giant Axonal Neuropathy. It's a horrible disease that takes its toll on a child's body in awful ways. It is an illness that affects the bodies of kids in ways that are very difficult for non-medical professionals to even understand. It's a nightmare that can't easily be identified or defined.
You look for help. The world will always rally behind a child in distress, and your belief is that you can count on that sentiment to find relief for your child. After all, who wouldn't go any distance to help a youngster?
The facts of the situation are these: The disease affects a very small number of children. Right now, there are probably fewer than 50 confirmed cases in the whole world. But should the fact that such a small group of kids is being hurt sentence them to a life of suffering? There is no cure for this disease. There isn't even a viable treatment available for the young people who are battling this illness. They simply lose all control of their bodies, and death usually comes very early in their lifetime.
Imagine looking for help for your suffering child, and finding little or none. Imagine fighting this war with very few people on your side.
Imagine this were your child.
Would you want help? Would you go to any lengths to get that help? Or for that matter, would you meet one of these children and turn your back?
There is no national "foundation" behind this group of suffering families and children. It's what you might consider an "orphan" illness. No telethons, no celebrity crusaders, no mass "awareness" programs. Most people will live their whole lives without ever hearing the name GAN. We should do something about that.
How about we start by watching this video. Then take the next step.

**Please help the GAN Warriors team meet their goal of 150,000.00 and send your change money to P.O Box 1864 Hamilton,Mt. 59840-1864. We will then send it on to Hannah's Hope Fund.** ( We want to track the money made for GAN Warriors so we know where we are in reaching our goal) THANK YOU!


Read more: http://www.digitaljournal.com/blog/17055#ixzz1yUCQTugb

Tuesday, June 5, 2012

A Mother's Love.


As a Mother, one could not imagine getting a diagnosis that not one, not two, but THREE of your children are going to slowly loose their bodies ability to function and eventually lead to death (GAN victims usually don't live past 20 years old).
Levi, Alan and Aaron have most likely already lived the best years (health wise) of their lives.
This would be any Mother's worst nightmare. Look at your  healthy children and imagine for a moment that you are in this Mother's shoes. What would you do? How would you feel?
I don't think that even imagining it comes close to experiencing this pain in real life.
The little things we take for granted like seeing our kids run, ride bikes, play football and baseball, are all things this Mom continues to hope for, for her boy's.
Now, look at this picture above. While the face's of these sweet boy's are very kissable, look at the smile on their Mother's face. That smile is there while she cleans up their throw up and rubs their aching legs. It's there when she calms their fears and dries their tears of frustration. I have never seen her without it, even with all she is going through.
She is an amazing example of  a Mother's love.
She has hope for a cure and because you care, you are her hope!
Thank you for spreading the awareness of GAN and for your love and donations. Every dollar gets us one step closer to a cure.





Sunday, May 27, 2012

GAN Warriors made the news!

The Ravalli Republic shared the GAN Warriors story! Below is the link to that article.
 The Parents of GAN are doing all they can to save their children. It's up to them to find the cure.
What an inspiration they are of love and courage for their children.
 Thank you Ravalli Republic for helping us spread the awareness of this deadly condition.
More awareness means a faster cure for these boys and time is not a friend of GAN.
 http://ravallirepublic.com/news/local/article_45a4ded4-a76e-11e1-a05f-0019bb2963f4.html

Friday, May 25, 2012

http://blogs.scientificamerican.com/guest-blog/2012/05/24/the-valley-of-death-looms-for-8-kids-with-a-rare-disease   

The link above is a very interesting article I wanted to share. I copied this section because it puts a lot in perspective for me. These children JUST want a chance to live, to walk and ride bikes. They JUST want to run and play with their friends, to grow up and have families of their own. I want this for them too and I know if you are taking the time to read this, then you want it for them also.  They are so close with this experiment and it can't come soon enough.
At this point every dollar counts, every prayer counts, every positive thought sent counts.
 Because you care, you are their hope!

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead
Help move the 'Mountain of GAN' Please make a Tax Deductible gift today @
http://hannahshopefund.org

Here it the part of the article I copied:
 

 

Hannah’s Hope has funded researchers at Emory University, Columbia University, the University of North Carolina and elsewhere to carry out the steps preceding the gene transfer experiment. And results have been so promising that the Food and Drug Administration (FDA) gave a tentative go-ahead this April, pending further toxicity studies in animals. Those are underway now, but cost $646,000 – plunging Hannah’s Hope Fund to the breaking point.
Lori estimates other costs:
- $430,200 for a 2-year natural history study for 12 patients to track the course of this ultra-rare disease, so that the researchers can determine exactly what to check to assess success.
- $220,000 to manufacture the viruses and their human gene cargo
- $600,000 for the phase 1, 2-year trial for 8 children
- $450,000 for a small Phase 2 trial to assess efficacy
That’s a total of $2,346,200. Then, hopefully, a biotech or pharmaceutical company will step in for the required larger phase 3 trials that precede FDA approval.
It sounds like a lot. But for comparison’s sake, $2,346,200 equals:
- approximately 1/30th of Johnny Depp’s fee for his next film
- 1/10th of what Alex Rodriguez earns in a year
- 10 speeches for Bill Clinton
- 6 of Kate Middleton’s wedding dress
- 2 years worth of nanny-time for Brad and Angelina’s brood
- Slightly more than Kim Kardashian’s useless $2 million engagement ring
- .07% of the money spent on the Obama and Romney campaigns as of March 2012.
The government isn’t funding the GAN gene therapy trial. So what the tiny GAN community needs, desperately and now, is a Michael J. Fox, Christopher Reeve, or Julia Roberts.
http://blogs.scientificamerican.com/guest-blog/2012/05/24/the-valley-of-death-looms-for-8-kids-with-a-rare-disease/

Tuesday, May 1, 2012

GAN Warriors awareness night!

Our first "GAN Warriors awareness night" was a huge success. The turn out was wonderful and the help was amazing. Thank you, thank you to all of you who came and who helped make this night so much fun. It certainly was a night to remember.
The slide show of the GAN Warriors was shown and a talk was given about GAN and Hannah's Hope Fund.
We also had a cake making challenge and that was incredible. There were two categories to enter, one being TASTE and the other being LOOKS. The day of the event only 20 people had registered to enter the contest, but there ended up being 64 cakes that showed up!
 Prizes for the winners were a  Kindle Fire, Ipod Touch, MP3 Walkman, camera, greenhouse gift certificate,and Bob Wards gift cards. A HUGE thank you to the local businesses that donated these prizes and made this event so exciting. It wouldn't have been possible without you!  
 Woody( from Toy Story) was there to greet the children and give them a balloon. Over two hundred balloons were blown up and by the end of the night almost half were on the gym ceiling.
Levi was so excited to see Woody and even more so when Woody gave him one of his guns to keep.
Just his smiles over that, made this night worth it!






Wednesday, April 25, 2012

What is GAN?


What is GAN?

Giant Axonal Neruopathy



Giant axonal neuropathy is an inherited condition involving dysfunction of a specific type of protein in nerve cells (neurons). The protein is essential for normal nerve function because it forms neurofilaments. Neurofilaments make up a structural framework that helps to define the shape and size of the neurons. This condition is characterized by abnormally large and dysfunctional axons, which are the specialized extensions of nerve cells that are required for the transmission of nerve impulses.

Giant axonal neuropathy generally appears in early childhood. It progresses slowly as neuronal injury becomes more severe. Signs of giant axonal neuropathy usually begin in the peripheral nervous system, which governs movement and sensation in the arms, legs, and other parts of the body. Most individuals with this disorder first have problems with walking. Later they may lose sensation, coordination, strength, and reflexes in their limbs. Hearing and visual problems may also occur. Extremely kinky hair (as compared to others in the family) is characteristic of giant axonal neuropathy.

How do people inherit giant axonal neuropathy?

This condition is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.


Currently, there is no cure for GAN.  As the disorder progresses, patients become quadriplegics, dependent on a feeding tube and ventilator. These children who are diagnosed with the disease have a life expectancy no longer than their early twenties while some die much younger.
  

     
   The mission of Hannah’s Hope Fund is to raise funds for a treatment and cure of GAN.  Lori and Matt Sames co-founded HHF following the diagnosis of their youngest daughter, Hannah, in March of 2008.  At the time of Hannah’s diagnosis, Lori was only able to find one scientist in the world actively studying GAN, Dr. Pascale Bomont, in France.  Dr. Yanmin Yang, Stanford University, had studied GAN, but her NIH and MDA grants ran out in 2006.



In August of 2008, HHF brought 20 research scientists together in Boston for the first ever symposium on GAN.  The goals of this meeting was to discuss everything known about GAN, and prioritizes therapeutic approaches, as well as prioritize basic research studies needed to learn more about underlying disease mechanisms.  Gene therapy was prioritized as the #1 therapeutic approaches coming out of this meeting. 



   Dr. Jude Samulski, Director of the University of North Carolina (UNC) at Chapel Hill Gene Therapy Center, sent research associate, Dr. Steven Gray to the symposium to assess whether or not gene therapy was a viable approach for GAN.  HHF began funding Dr. Gray’s work on GAN Oct. 1, 2008. Due to the efforts of Dr. Gray, utilizing more than 25 years of experience obtained at the UNC Gene Therapy Center, there is now a gene therapy approach for GAN. 



On Jan. 26th, 2012, HHF and the UNC clinical team had a Pre Investigational New Drug (Pre IND) meeting with the FDA, and with their guidance, we now have a clear path forward to a GAN gene therapy clinical trial.  The GAN disease community will likely be the first disease community to receive a therapeutic gene to the spinal cord.  The goal is to stop disease progression. Gene therapy will not reverse cell death, so it’s critical these kids receive treatment ASAP.  Every clinical trial is a human experiment.  It will not be known if gene therapy will be an effective treatment for GAN until our clinical trial(s) end.

  

     Through grass-roots fundraising, Hannah’s Hope Fund has had to bear the burden of funding the gene therapy project and a FDA required Natural History Study to track the natural progression of the disease as well as show efficacy of the IND.  HHF, primarily a family and volunteer driven charity, is working tirelessly to move all the children suffering from GAN one step closer to receiving a treatment that will stop the progression of this disease and ultimately save their lives. We are deeply appreciative of our loyal supporters who have made all of this possible.
                                                                                                                                                                   

Sunday, April 22, 2012

  Charee says Alan has been having head aches a lot lately, and wants to be held all the time. He's been dizzier too, and not walking well. The twins will be getting walkers soon. They will have a little walker parking lot in their entry. Please do what you can to share their story. More publicity might mean faster medicine.
Thank you for your prayers and your help in this sweet families behalf.
Together, we can make  difference!

Sunday, April 15, 2012

"If you would like to let the family know you care" you can! at GAN Warriors P.O. 1864 Hamilton MT 59840-1864 All Checks and money contributions should be made to "Hannahs Hope Fund" all contributions are tax deductible!

Monday, April 9, 2012

GAN Warriors - 3 Brothers Living with GAN



Levi, Allan & Aaron suffer from Giant Axonal Neuropathy (GAN) which is a rare genetic disorder that slowly takes away one's ability to walk, use one’s hands, speak, swallow and is terminal. The disorder is so rare that there are approximately 28 people worldwide living with GAN (including Levi, Allan and Aaron).
There is no cure for GAN today but there is HOPE. Because GAN is an extremely rare disorder the funding for research and trials is very limited. Dr’s and Scientists are now working together on a new gene therapy that may halt the progression of the disease and may possibly repair some damage in nerves that are not yet dead.  The first human clinical trial begins in the fall of 2012.
Please join our mission and help us save these three precious lives.
You can help find a cure by offering any amount of monetary donation to www.hannahshopefund.org.  


Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead
Donate all you can to cure GAN
http://www.hannahshopefund.org/.