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Let's Huddle Up for Hannah
You might remember Matt Sames -- playing sports for Plattsburgh High School, pitching fastballs for Lemoyne College and throwing touchdown passes for the Plattsburgh North Stars semi-pro football team. A young man always ready for a challenge.
Along the way he met Lori Burnell -- intelligent, athletic, beautiful -- and they married. The Sames family has been living in Clifton Park, about 140 miles south of Plattsburgh. With three children and a busy life, Matt and Lori were living a happy life.
Since March 27, 2008, however, their lives have been turned upside down. On that day their four-year-old daughter Hannah was diagnosed with an extremely rare terminal genetic disease called Giant Axonal Neuropathy (GAN). It is one of the rarest diseases in the world. It is estimated that only 20-50 children in the world have GAN.
There is no treatment, no cure, and very little research, since GAN affects so few children. It is a degenerative disease that initially affects walking, but eventually leads to an early death, perhaps twenty years later.
Don't expect Matt and Lori to back down from a challenge, the greatest challenge they have ever faced. They have begun a campaign to save Hannah's life and the lives of other children with this disease. They have established Hannah's Hope, a foundation for donations to pay for research. They have contacted medical facilities and doctors around the world.
There is initial interest from Stanford University and Columbia Presbyterian Hospital in New York City. About two million dollars is needed to initate the research process. Sounds overwhelming. But don't question the determination of those who join Hannah's Hope.
Finding a treatment and a cure for GAN will take millions of dollars more. But, as both Matt and Lori have said, "Someone has to be the first -- the first to be cured."
A website has been designed -- http://www.hannahshopefund.org -- and it is very informative. Included is a short video explaining the story of Hannah and the challenges the Sames family face.
After a visit to the website, I'm sure the Blogoteers will want to get on board and huddle up with Matt, Lori, and all their family and friends.
It's as if Matt is facing a third down and long situation -- and he's huddling up to come up with the right strategy. I've got a feeling he's going to throw a touchdown pass into the waiting arms of Hannah.
NOTES:
Matt, a 1986 graduate of Plattsburgh High School, is the son of Katie and the late Ray Sames. Matt is the nephew of Judy and the late Mike Mannix, as well as Peg and Marty Mannix.
Lori, a graduate of Beekmantown Central, is the daughter of Judy and Earl Burnell.
Matt and Lori have three children: Madison (9 years old), Reagan (6 1/2) and Hannah.
Mark your calendars -- two fundraisers for the Hannah's Hope Foundation are being organized -- July 20 at the Rainbow Room in Altona and September 15 at Mainely Lobster. See you there!
LATE ADDITION: Bill Watson, organizer of the Mayor's Fun Run and Ride on July 4 in Plattsburgh, will donate all proceeds from this event to the Hannah's Hope Fund. For more information on this event, check the website: http://www.NLrunners.com
Also, watch for a "Fox on the Run" interview on the local cable public-access channel, hopefully sometime in June.
Comments
Foxy,
As Lori's older sister, I know that she and Matt will not stop until a cure for Giant Axonal Neuropathy is found. They are driven by the love of their children to have Hannah be the first child to be cured. Together, as a family, as a community of loving neighbors, and as an organization, we will do whatever it takes to meet this tremendous challenge.
We need to continue to send the website www.hannahshopefund.org to everyone we know, near and far. Please help in any way possible, whether it be by monetary donation or volunteering at one of our upcoming fundraiser events.
Thank you friends & neighbors! Carrie Burnell-Favaro (Hannah's Aunt)
Posted by: Carrie (Burnell) Favaro | May 20, 2008 1:40 PM
Mr. Gagnon,
Thanks for being a champion for the Sames family and helpng their daughter have a voice. I myself have an angel. He will be 17 this June but the doctors said he wouldn't make it to 2... so miracles do happen and hope they can for the Sames family. The simplest things can have the most impact.
Posted by: Leah Miller Hunkins | May 14, 2008 8:16 AM
Isn't PayPal great? I went to school with Mitch Sames - he must have been Matt's uncle. I know Earl from long, long ago when he hung around with Art LaMarche across the street from me. Giving to this foundation is a pleasure & I encourage everyone to help. Thank God for all of our many wonderful blessings.
Posted by: Miney Rowlson | May 13, 2008 7:41 AM
Foxy,
Sounds like it's time for the Blogoteers to reunite at Merons to help the Sames-Burnell families. Get with The Carver to pick a date with some of his patented money raising ideas. I can't think of a better group of people to help our friends.
Craig Mathews
(Foxy's note: Craig, great idea! I am with you on this one! I'll talk with the Carver tomorrow.)
Posted by: Craig Mathews | May 11, 2008 5:04 PM
Foxy, thank you so much for your kind message and encouragement. As you stated, we have the people, we have the plan, and now we just need to raise the money. Our research team at Stanford only needs about $300,000 annually to resume the testing they had started a few years ago. They have already successfully bred mice with the GAN mutation, so now we are going to fund their colonization of those mutated mice.
This research team truly believes they can cure GAN, but just needs money and focus. They also believe that once GAN is cured, it could be the gateway to curing other neurodegenerative diseases such as Lou Gehrig's Disease, and others.
That's our mission now. Thanks again for helping us get our message out and please keep us in your thoughts. Your friend, Matt. www.hannahshopefund.org
Posted by: Matt Sames | May 11, 2008 10:59 AM
Foxy,
Hannah is very lucky to have such great parents. Matt and Lori will stop at nothing to save their little girl. Plattsburgh has always rallied to help "their own" and I am sure this situation is no exception. We are all saying extra prayers for Hannah and her family.
Thank you Foxy,
Keep up the good work!!
Lisa Holmes Mulson
Colonie , NY
(Foxy's note: Lisa is the daughter of Polly and the late Ray Holmes. Ray was a longtime coach and Athletic Director at Plattsburgh High School.)
Posted by: Lisa Holmes Mulson | May 11, 2008 10:06 AM
Thank you for your consideration here, Foxy.
In speaking with Matt this week, he is definitely a man with a mission. We are working hard here in the Albany area to bring him all the media exposure we can. I am working with NBC in New York to try and get some national attention brought to this tragic story as well.
Before last week, I had no idea what GAN was; now I can actually pronounce and spell it. Before last week, my life was routine; playing with Spencer (my son), going to work, coaching baseball, and spending time with my family. Now, we have a friend in need. We must unite, spread the message, and do whatever we can to help Lori, Matt, Hannah, Madison and Reagan.
We are asking everyone everywhere to spread the word. Forward the website link, www.hannahshopefund.org, to every e-mail you know. Watch the video and go to some of the links for more information about Giant Axonal Neuropathy.
If anyone has any ideas on how to further spread the word, please let Matt or myself know. If you have friends in the media or public relations business, have them call Matt 518-383-9053 or myself at 518-461-8117.
Thanks,
Kern
Posted by: Kern | May 11, 2008 9:42 AM
Wonderfully put, Foxy!
Matt and Lori not only are longtime family friends but also my nieghbors.They are amazing people and they will do this, we are rallying behind them and I know that all of the North Country will as well. I am asking that everyone that reads this blog tells everyone they know and reaches out to help whether it be by a monetary donation or volunteer time to help at one of the many events. Thank you Plattsburgh- Beth Butler Haig (Hannah's Neighbor)
Posted by: Beth Butler Haig | May 11, 2008 8:04 AM