Unique Non-Profits

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The Capital Region is full of many non-profits, each doing its best to help those in need. Whether it’s providing shelter to the homeless, helping families whose loved ones are suffering with disease or giving low-economic children a Christmas to remember, one thing is true: the people behind these programs are truly dedicated to their cause. 

This month we are highlighting two of them: Hannah’s Hope Fund, the only foundation in the world raising money for a rare genetic disorder and The Century House’s "Enjoy One Share One" program, a meal matching program that provides meals to those in need. 

The Century House 
"Enjoy One Share One" program

Many times, charitable giving begins before Thanksgiving and ends the day after Christmas. But not at the Century House in Latham. Colin DeMers, managing partner of the hotel/restaurant started the "Enjoy One Share One" program last June. The concept is simple: for anyone who orders an entrée at the Century House (be it in the dining room or at a banquet, meeting or wedding), the restaurant will provide a meal in your honor through the Regional Food Bank of Northeastern New York to someone in need in the community. Since its inception, more than 40,000 meals have been served, with that number growing daily. 

It all started last year, when several corporations cancelled their holiday parties, due to the economy. Instead, the companies chose to make charitable donations.

"They didn’t realize that they were inadvertently adding to the economic problem," DeMers said. By cancelling, his servers, cooks and other workers who were counting on their salaries were now out of work for that evening. And many of them were struggling single parents. "It bugged me daily," he said. 

DeMers decided to open up the available rooms at the restaurant, provided the hors d’oeuvres and invited non-profits in to host their holiday parties.

But it didn’t stop there. 

"I wanted to find a way to encourage guests to enjoy dining out and to participate in events while at the same time stimulating the economy, employing workers and providing food for those in need."

He was inspired by a company in California called TOMS Shoes, which operates a program called One for One. With every pair of shoes purchased, TOMS donates a new pair of shoes to a child in need in South America. 

DeMers decided to do something similar, but with what he knew best – food. So he contacted Joann Dwyer, director of Food Sourcing & Business Development Representative at the Regional Food Bank in Latham, and came up with the idea to donate meals. Since 1982, the Food Bank has collected food donations and distributed them to various charitable organizations in 23 counties. 

"Local pantries and soup kitchens are reporting increases of 30 percent or more," Dwyer said.

Guests are encouraged to sign the "Book of Giving" in the restaurant’s lobby, which memorializes participants and serves as a reminder of the number of donations made.

About a month after the meal-for-meal donation program launched, DeMers teamed again with the Food Bank, to kick off a monthly on-site feeding program at various venues around the Capital Region. 

All food for the program is donated cooked, prepared and served by DeMers and his staff. He dons an apron over his suit and enjoys chatting with everyone he serves on the line. 

"We are providing hospitality at the soup kitchens that we would provide at the restaurant," said DeMers, who happily dons an apron at each event and enjoys chatting with everyone he serves.

The recipients are extremely thankful, and helping those less-fortunate has had a positive effect on him.

"You can’t not have it change you."

The success of the program has inspired DeMers, yet again – he has future plans to offer a workshop at his restaurant for soup kitchen volunteers to learn professional secrets, recipes, etc. from his chefs.

The Century House certainly lives up to their mission statement of "making the world a better place, by providing comfort and care to the body and soul of all guests, staff and the community."

Upcoming soup kitchens this winter include the Community Meal Program in Schenectady this month, St. Johns, St. Ann’s Welcome Table in Albany in February and the Saratoga EOC in March. For more information on this or the "Enjoy One Share One" program contact The Century House at 785.4536.

The Century House Hotel/Restaurant/Conference Center is located at 997 New Loudon Road (Route 9), Latham. 

 

Hannah’s Hope Fund

Hannah Sames is a precocious, loveable five-year-old girl who lives with her parents, Matt and Lori, and two older sisters, Madison and Reagan, in Rexford. Like any typical child her age, she enjoys her dance classes, loves to sing songs and enjoys playing out in the snow with her sisters and the neighborhood children.

"Everyone who meets her just falls in love with her," said Matt. 

The only thing setting her apart from her peers is that she suffers from a rare genetic disorder called Giant Axonal Neuropathy (GAN), which slowly takes away one’s ability to walk, use one’s hands, speak, swallow, and sadly, is terminal. For Hannah, right now it means that she has trouble walking and falls a lot. This disorder, which generally shows up in early childhood, is slower progressing, but similar to Lou Gehrig’s Disease and affects fewer than 10,000. Extremely kinky hair (as compared to others in the family) is characteristic of GAN. While most ALS patients die in two or three years, GAN patients can live into their twenties, but similar to ALS, they become quadriplegics, dependent on a feeding tube and ventilator before dying (typically) of pneumonia. 

It became apparent that Hannah had a problem when her left arch was rolling out at the age of two-and-a-half. But nothing could have prepared her parents for what was to come. It took two years of visits to doctors (a couple of whom dismissed her as "perfectly fine") before finally being diagnosed with GAN by a pediatric neurologist from Columbia Presbyterian Children’s Hospital in NYC in March 2008. 

During genetic counseling, the couple learned that there is no cure or treatment and no clinical trial or ongoing research being conducted for this rare "orphaned genetic disorder". Stem cell therapy breakthroughs are several years down the road and may not even be able to treat or cure GAN, so the cord blood they preserved from Hannah’s birth couldn’t be used.

Matt and Lori also learned that they were both GAN carriers and each passed a mutated recessive gene on Hannah’s 16th chromosome. Carriers never get the disease, but can display mild symptoms, like low muscle tone or mild neuropathy in the extremities as you age. There was a 25 percent chance their children would be born with GAN, and a two in three chance their two older daughters are carriers. 

After three hours of counseling, Lori finally asked, "So you are telling us this is a death sentence?" And they were told, "Yes."

After experiencing the initial shock, anger and feelings of hopelessness, the couple sprang into action. In a matter of weeks, they formed a foundation called "Hannah’s Hope Fund" to raise money for Hannah and other kids who have the disease. So far, it is the only known foundation in the world actively raising money for GAN.

By April 2008, a month after the diagnosis, they had a nine-member board of directors in place, comprised of friends, family and others who simply wanted to get involved.

John Burke, a close friend and former neighbor of the Sames’, is one such volunteer. As vice-president of the board, he has been involved since the beginning stages and said the fundraising has gone really well, considering the economy.

"It’s a challenging market to try to raise money in for a new and unheard of disease and foundation, but we’re fortunate enough that the community at large has been supportive of the cause."

To date, the Foundation has raised $700,000 in total, and thanks to someone in the community who submitted an application on their behalf, they are the recipients of a matching grant from Doris Buffett’s Sunshine Lady Foundation for all funds raised through February 15, 2010, up to $500,000. Currently, they are about $300,000 into the matching grant.

"We’re trying to get recognition from celebrities around the country to help us out," Burke said.

One glance at their online calendar of events and it’s easy to see how aggressive they have been in their efforts. From runs to poker games to concerts to golf tournaments to car washes to a father/daughter dance, a month doesn’t go by that they aren’t doing something. Recently, they were the recipients of a $25,000 donation from the Charles Wood Foundation. And on February 6, there is a black-tie event at the Desmond Hotel in Albany.

"We’re hoping people will want to spend an incredible evening with their friends, while benefiting a very worthy cause," said Lori.

The Sames’ mission is to find a cure or treatment by the end of 2011. Thanks to them, the science has begun and they are on track for clinical trials to start, which will also help those with other neurodegenerative disorders.

"We still have those moments when we feel every emotion, some days we’re just mad at the world and the situation, other days we’re incredibly sad, but in between we just try to keep our focus and stay true to our mission," said Matt.

For more information about Hannah’s Hope Fund visit www.hannahshopefund.org.

 

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