2009 Raffle Winners!

1.       Polaris 4 Wheeler:  Kenny Addis  (Son of Marci Godin), Waterbury, VT

2.       Needle Point Doll House:  Nancy McDonald, Plattsburgh, New York

3.       American Girl Basket Winner:  Laura Allen, Peru, New York

Hannah at the January, 2010 Colonie Outback Big Steak Out. The 2009 Run for Life was huge success.  Together we raised over $43,000 for Hannah’s Hope Fund, which will be doubled by a matching grant from Doris Buffett’s Sunshine Lady Foundation!   The attached link is a video montage  from the day of the race.   http://www.onetruemedia.com/shared?p=9e6f43c67558244f0d38d1&skin_id=601   Race photos are available at www.gregwolcott.com.

November 11, 2009 Dance-A-Thon for Hannah.  Stars of Dance, 509 Moe Road, Clifton Park, NY.



November 2 -7, 2009: THANK YOU SIENA!  Siena's Charity week raised $20,000!

September 20, 2009 Halfmoon, NY Old Dater Farm 5k Run for Hannah: Click here for Race Results! 

	September 8th, 2009 -  The 2nd Annual Hannah's Hope Golf and Dinner Event was held at the Edison Club.  Former NY Yankee Chris Chambliss was the VIP guest.
The Sames Family at the Edison Club		Katie Sames & Chris Chambliss

August 29, 2009 - The Crystal Lake Triathlon in Averill Park NY to benefit Hannah's Hope Fund went off at 8am on Saturday August 29th in the fog and rain.  There was a mere 4 minutes between waves, but the swimmers disappeared quickly.  The water temp was 78, so the water felt great and was much warmer than the air!  Athletes had a great race despite the rain. Read all about this wet, but successful event.


July 21, 2009 - The 2nd Annual Hannah's Hope Golf & Dinner Event at Colonie Golf and CC was a great day for all who attended. The weather was beautiful, the staff was very attentive and did a wonderful job, and we raised about $25,000.  It came on the heels of the 2nd Annual Dinner & Auction at the Rainbow Room in Altona, NY, in which Aunt Carrie Favaro organized a very impressive event that featured 100 items up for bid. Our MC and Auctioneer Extraordinaire, Gary Finney, did a magnificent job hawking our items. We raised about $5,000 and in doing so, continued to publicize our mission throughout the Northern New York area.

April 2, 2009- WHEEEW!!!  We had a fantastic fundraiser Friday, March 27 at Solid Surface Craftsman in Glenville, NY.  Our good friend, Alan Boulant, hosted an 8 hour Corned Beef, Cabbage, March Madness and More Fundraiser for Hannah's Hope and we raised over $20,000.  Many thanks to the Glenville Business and Professional Association, Angelo Mazzone, Lisa Pagan, Kelly Olsen, Jack Aernecke, Chris Sabatello, The Town of Glenville, and everyone who pitched in to help our cause.  Then on Sunday, March 29th, we hosted "Drew Seeley and Friends", a concert for Hannah's Hope at The Palace Theatre, Albany, NY.  The performers (Drew, Savannah, Tiffany Giardina, Ruth Collins, Push Play, and Bre Morgan) were so gratious and warm, it made for a very special day for the Sames Family and our community.  If you have never been to The Palace, you need to make a visit.  It is a gem of a building and a beautiful venue.  One of the most memorable moments was when Drew sang to Hannah (sitting in the front row with the spotlight on her).  Her mom asked her what it felt like when Drew was singing to her, and Hannah said, "It was like a miracle."  

 

 

 

 

 

 

February 28, 2009- Lori Sames, Executive Director of Hannah's Hope Fund, Spearheads Effort for New York State to join the World in observing Rare Disease Day.  Hannah's Hope Fund sumbitted a Proclamation to Governor Paterson to designate Feb. 28th as Rare Disease Day in NYS.  He agreed to sign the Proclamation, joining the rest of the US and millions world-wide in observance.  There are nearly 7,000 rare disorders afflicting nearly 30 million Americans and many more world-wide.  There are treamtments for less than half of rare disorders, leaving 15 million Americans without treatment.  The purpose of this day is to raise awareness of the challenges the rare disease community faces getting proper diagnosis, raising funding for research for treatments and difficulty finding medical experts.  Please join us in observance.

12/08  Happy Holidays to all!  Great things will happen in 2009!  In Oct., Hannah's Hope Fund hosted a gene therapy meeting at JFK Airport in NYC. At the symposium held in Aug., gene therapy was identified as the #1 therapy to be pursued to treat GAN, therefore, we brought together the top gene therapy scientists, as well as top neurosurgeon, Dr. Nicholas Boulis, from Emory Univ., to plan the collaborative GAN gene therapy initiative.  The mechanism of this therapeutic approach can be applied to any neurological disorder that is genetically based.  Hannah's Hope Fund is taking gene therapy far beyond what any other gene therapy clinical trial has tried to achieve.  With GAN, both the brain AND spinal cord must be GLOBALLY treated with the virus vector to deliver a healthy GAN gene to nerve cells.
 
Thankfully, Hannah's Hope Fund has been able to raise enough money through our many events to provide seed funding to Dr. Steven Gray, UNC, Chapel Hill, to conduct a proof-of-concept study to validate GAN gene therapy is successful in a mouse model of the disease.  Results of this study are expected within a few weeks, at which time we will be submitting a letter of inquiry to a large foundation that was setup by a generous local family who shares our goal of profoundly changing lives.  We pray this foundation will provide the funding needed over the next 4 years, which is how long it will take until our GAN gene therapy clinical trial is completed. 
 
We, as well as the other families with children with GAN, are deeply appreciative of the love and support Hannah's Hope Fund has received.  Thank you for helping us on this life-saving mission that will benefit all genetic neurological disorders for generations to come. ---Lori Sames, Executive Director 

September 21, 2008- The 2008 Run for Life event for Hannah's Hope raised over $20,000 yesterday.  Our dear friend, Julie Gauer, organized an incredible fun run/walk 5k in Halfmoon, NY.  Over 420 people participated, over 20 corporate sponsors lended their support and the weather cooperated nicely.  Way to go, Julie!

The day before, Bart Holstein redirected his brother's memorial golf tournament proceeds to Hannah's Hope.  Many thanks to Bart and his mother, Yvonne.

Last Monday, September 15, the raffle drawing took place in Plattsburgh and the winners are as follows: 

$10,000 Winner:

Craig Crowningshield

59 Cedar Lane

Willsboro, New York 12996

$5,000 Winner:

Peter Aust

55 Yorkshire Drive

Queensbury, N. Y.

$3,000 Winner:

Claudia Thomas

65 Lincoln Avenue

Albany, N. Y. 12206

$1,000 Winner:

Curt & Nancy Smelt

P.O. Box 185

Bombay, N.Y. 12914

$1,000 Winner:

Philip Margiotta

19 Birch Hill Road

Ballston Lake, N.Y. 12019

American Girl Doll Basket Winner:

Hannah Walton

14 Maple Leaf Drive

Saranac Lake, N.Y. 12983

September 4, 2008- Amazing!  That is the best word to describe the World's First Symposium for GAN, which took place August 14-15 in Boston, MA at the Hotel Commonwealth.  We assembled world reknowned neuroscientists, biochemists, medical researchers, physicians, and GAN families and supporters.  We were able to attach faces to this orphan disease (which many had only seen in text books and mice).

Many important takeaways resulted from our conference.  Among them are the following:

1. Collaboration is occurring between researchers now.

2. Research projects (funded and unfunded by HHF) are underway.

3. Multinational lines of communication have been established in our quest for a cure for GAN.

4. Research proposals are being submitted to us for funding.

We are receiving proposals from Stanford University, Univ. North Carolina Chapel Hill, Ohio State University, as well as individual laboratories in France and Quebec.  Our primary avenues for the next 24 months are Gene Therapy and High Through-Put Compound Screening for Drug Therapy.  Our task is daunting, but quantifiable.  We need to raise $1.6 million in the next 12 months, and another $2 million the following 12 months in order to approach the FDA with a plan for human clinical trial.  As with all scientific pioneering, these plans are subject to change. However, now we have a direction and a logical approach to finding a cure. 

August 11, 2008- We conducted a fundraiser at the Saratoga Polo Club on Friday, August 8th called "Smoke and Ponies".  The rain cancelled the polo match, but we still had a very good time.  Passed hors d'ouvres, live band, complimentary cigars from Scottie's Havana, a live radio remote with WROW-AM (an Albany Broadcasting Company), and fantastic customer service from Jim Rossi and his staff made for a very nice evening.  The next morning we held the Mike Mannix Memorial Golf Tourney in Plattsburgh at Adirondack Golf Club.  It was a huge success, with about 40 foursomes competing.  The weather cooperated, and everyone had a great time.  Many thanks go out to Grandma Katie Gluck, Grandpa Earl Burnell, and the many, many volunteers who contributed time and money to the Hannah's Hope Fund. 

The symposium is going to be held this week in Boston, August 14th and 15th.  Stay tuned!