She went to school inside a sleeping bag. Her mother drove. On arrival, and safely indoors, the sleeping bag came off and the school took over.
Wherever she moved inside the Taconic Hills building the windows along her route were shaded, fluorescent lighting changed to incandescent and even some vending machine lighting was blocked out.
All of these precautions were necessary because even a fleeting exposure to sunlight or even fluorescent lights would blister Katie Mahar’s skin causing third degree burns.
Katie suffers from Xeroderma Pigmentosum (XP), an extremely rare condition that causes life-threatening ultra-sensitivity to UV rays.
But skin sensitivity is not the only symptom of XP or even the worst. The UV rays attack on the cellular level, damaging organs and causing rare skin and eye cancers so people with XP rarely survive childhood. Katie, who is now deaf and nearly blind, is at age 29 the oldest XP sufferer in the world who has not yet been afflicted by related cancers.
Those with XP belong to a very exclusive club- there are only about one in a million of them scattered throughout the world. As you can imagine, they have few if any friends. When the neighborhood kids are playing in the summer sun, the XP child stays indoors. For a youngster, the isolation may be the worst part.
That’s why in 1995, Katie’s parents Caren and Dan Mahar created Camp Sundown in Craryville, NY. It is the only camp in the world that caters to children with XP and their families. Like other sleepover camps, there are campfires and marshmallow roasts and sing-alongs and kickball games, but here, all activities are enjoyed at night. It is the only time each year that these kids can run and play outdoors with others “just like them”.
And because of the financial strain that XP can put on families, the Mahars welcome everyone to Camp Sundown free of charge.
Sunday October 24th, there will be a very cool fundraiser at Copake Country Club to raise money for Camp Sundown- The 2021 Camp Sundown Golf Ball Drop. Here’s how it works- you buy a numbered golf ball for $25 either online or at the event. Then at 2:00 pm a helicopter will drop the balls onto a makeshift “green ” on the first fairway. The first balls to drop into the holes win valuable prizes. There will also be raffles to reward other number holders.
You needn’t be present, but wouldn’t you want to be? See you there!
For more information about Camp Sundown or the Golf Ball Drop call Caren@518-929-2174 or email at email@example.com.
To buy a ball online go to: https://www.xps.org/.
No one can know how many lives have been made better thanks to Kara Zinke. The 18 year old died of a cerebral hemorrhage in 1993. Back then, because Kara was an organ donor, four people’s lives were saved through the gifts of her heart, kidneys and liver.
These days Kara’s family organizes the Kara Zinke Emergency Fund Golf Tournament to help local families who, because of illness, accident or other tragedy, find themselves in emergency situations. The funds, often as much as $13,000 a year or more, are distributed through a partnership with the Canaan Northwest Lions Club.
20 foursomes teed up for Saturday’s 10th Annual Tournament at the Canaan Country Club where the mood was festive and the weather was New England autumn gorgeous, and four generations of Zinkes were on hand to oversee the event.
For the Zinke family the money raised from this tournament is their way to give back to a community that showed them so much kindness when they needed it most.
The Annual Kara Zinke Emergency Fund Golf Tournament is the organization’s major fundraiser for the year. To learn more about the fund or to make a donation visit firstname.lastname@example.org.
I can’t believe it’s been six years – it was September of 2015 when Joey Sherwood took his life, and an entire town wept.
Ever since, Joey’s widow Joy has been taking part in the Out of the Darkness Community Walk, an annual event sponsored by the American Foundation for Suicide Prevention (AFSP). The Walk allows Joy to honor her husband and connect with other survivors who share her particular brand of pain.
The Walk is also a fundraiser, and although it doesn’t take place until September 26th, participants like Joy have already been busy raising money to help AFSP continue their important work.
Like last year, Joy is the leading fundraiser for the Dutchess/Ulster Walk, but she needs your help to reach her goal. The AFSP has a goal too- to reduce suicides by 20% by 2025 (nearly 50,000 Americans die each year from suicide).
To help Joy and to honor Joey’s memory please consider a contribution by following this link: https://afsp.donordrive.com/participant/Joy-Sherwood-2021
The AFSP teaches grade schoolers about mental health, continues research into what causes people to attempt suicide, and educates the general population about what behaviors to look for and how to get help for someone who exhibits those warning signs.
To get more information about the Dutchess/Ulster Out of the Darkness Walk visit: https://sportingacause.com/event/dutchess-and-uls…-against-suicide/
For the Berkshire County Out of the Darkness Walk go to : https://sportingacause.com/event/berkshire-county…-prevent-suicide/
For the Columbia-Greene Out of the Darkness Walk go to: https://sportingacause.com/event/columbia-greene-…-against-suicide/
Suicide is the 10th leading cause of death in the US.
To learn more about AFSP’s good work visit https://afsp.org/
Virtual events were the salvation of sports-related fundraisers, especially running/walking affairs during the pandemic. When you couldn’t gather to run a race for your favorite cause, you could still run an isolated distance and support your charity.
Well, in-person races are back now, but as you can see on Facebook, the virtual versions persist, and you may want to look closely at the causes they “support” before you buy in.
See names like “5X5K For Good”, “India Breathe Strong”, “Miles For Mutts”, “Let Freedom Ring 5K”, “Hold the Door for Others 5k” and on and on…
All have a virtual element, but their locations, causes and financial involvement are often obscure. One race supports an animal shelter, a noble cause, but it’s located in Dallas. Other virtual races boast of supporting legitimate causes, but after you register and pay your fee, you (not the organizer) are asked to make a donation to the charity.
Truth is, many virtual 5K’s, 10K’s and marathons are just for-profit ventures without a hint of philanthropy involved.
If you are a runner or walker and want to participate in races that truly support worthy local causes, here are some upcoming suggestions from sportingAcause.com:
Run With The Animals 5K, June 27th in Goshen, CT, supports the NW CT YMCA
Andrea Marcoe Racing to Save lives 5K, Union Vale, NY, supports Nat’l Brain Tumor Society and Dana Farber.
Pawling Triathlon, Pawling, NY, supports Pawling Recreation.
Litchfield Hills triathlon, New Hartford, CT, supports Brodie Park.
Canaan Railroad Days Run, July Canaan, Ct also supports the NW CT YMCA
You can find hundreds more events of all kinds throughout the year at sportingAcause.com, and they support causes you care about!
It has been an era of firsts for Salisbury Winter Sports Association’s own Seth Gardner, fresh from his return from Steamboat Springs, Colorado where he competed in this year’s Junior Nationals.
Seth is the first member of Team SWSA to jump off our 70 meter hill in many years. He also made the Junior National team four consecutive years and competed in the annual Junior National competition three times ( the fourth was COVID canceled).
At Steamboat, Seth came in 7th in the team category and jumped a personal best 58.5 meters in a field that included some of the best junior jumpers in the country.
Earlier this winter Seth ( far left in the picture) helped out with coaching duties for the junior jumping program, continuing a teaching tradition that dates back to the beginning of ski jumping in Salisbury.
We at SWSA are very proud of Seth’s accomplishments, and he certainly serves as a role model for our other junior jumpers who are coming along.
The Travelers and Travelers Championship announced a couple weeks ago that they would jointly match all donations, up to $1 million, made to the Hole in the Wall Gang Camp after a devastating fire caused severe damage to their facilities.
This was welcome but not unexpected news. The Travelers Championship has been a long-time supporter of the Camp which provides camping experiences for 20,000 children with serious health issues every year. The Camp was founded by the late actor/philanthropist Paul Newman.
What many may not know however is that the Travelers Championships supports more than just-high profile charities. Much of the $1.6 million raised at last year’s Tournament came from the Birdies for Charity program which benefited well over a hundred area charities, both large and small. In our neck of the woods the Northwest CT Habitat for Humanity and the HVRHS Golf Team have both received support in recent years.
So here is what you can do for your favorite charity. Encourage them to sign up for Birdies for Charity (any charity in Connecticut or the Northeast is eligible ) and take advantage of the Travelers program as long as it is a 501c3 registered non-profit.
Once enrolled, your charity can gains access to the Travelers’ national fundraising platform to tell their story and use the program’s turnkey administration. Then Travelers will donate an extra 15% of whatever money your cause raises!
Although the Travelers Championship won’t be until June 21 – 27 this year now would be a good time to get involved. You can access the information here: https://travelerschampionship.com/birdies-for-charity/.
The following letter appeared in the Jumpfest 2021 program that appeared as an insert in the February 3rd issue of the Lakeville Journal
What will be our take-away from the year just past?
We have seen it all, haven’t we?
Most of us have lost something – our freedom to move about as we’d like, our peace of mind, our dignity, our livelihoods, or for some, even our lives.
Schools and businesses have been shuttered , and we have been denied the company of our families and our friends. Fundraising events for our beloved charities were canceled. Some of us have had to swallow our pride and ask for food. Fear and distrust hang in the air like the virus itself.
But we humans are a good and resourceful lot, rising to our many challenges. At the pandemic’s beginning, when masks were in short supply, folks started sewing them and giving them away. As the demands on food banks increased, so too did food drives. Even restaurants with plenty of problems of their own, have gone above and beyond to provide dinners for those who need them.
And this Christmas time when Santa could not host young visitors, he hopped on a fire truck and visited their homes.
As charities could not hold gatherings for their fundraisers they have relied more heavily than ever on their annual appeals, and donors have responded.
So it has been with SWSA this year. We lost the Brew Ski Fest, a major fundraiser, but our Golf Tournament was successful and we shared our good fortune with the Jane Lloyd Fund. Our annual Ski Swap was a great success as eager shoppers stood for hours in the drizzle, and our very loyal and generous supporters have responded to our annual appeal.
Yes we have seen it all.
So what will be our take-away from the year just past?
Will there be continued fear and loathing from this too-long crisis, or will we recognize a light at the tunnel’s end along with its accompanying hope?
Here at SWSA, as we jump into 2021, we’re going with hope.