By Jennifer Leventhal
As reported in our last issue, supporting local charitable organizations is a way of life among residents of New Castle. In this edition, we celebrate the volunteers who lend their time, energy and fundraising skills to local organizations that support individuals and families facing life threatening illnesses. Their reasons for volunteering are as moving as they are diverse. Again, it would be impossible to highlight all of the important local charities that are worthy of supporting, so please watch our website for additional reports.
Friends of Karen
Friends of Karen’s mission is to provide emotional, financial and advocacy support for children with life-threatening illnesses and their families, in order to help keep them stable, functioning and able to cope. These services are offered regardless of race, religion, gender, handicap or national origin.
In the past 33 years, Friends of Karen has served more than 4,000 children and their families. When siblings are counted, the organization has touched the lives of more than 10,000 children.
Friends of Karen operates in accordance with its core values of Compassion, Dedication, Respect, Integrity and Impact. www.friendsofkaren.org
“Friends of Karen is a great organization that supports critically ill children and their families,” explains Steve Swirsky, a member of the Friends of Karen board of directors. “FOK is really unique in the way that it works to support and assist the entire family, not only the child with a critical illness but his or her family, including parents and siblings in dealing with the stresses and pressures of having a child with a critical illness.
This includes not only financial but emotional needs and the difficulties of dealing with the challenge of keeping a family and home together.”
Crohn’s and Colitis Foundation – Westchester
The Crohn’s and Colitis Foundation of America’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. CCFA is a non-profit, volunteer-driven organization, founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D.
Four decades ago, the Crohn’s & Colitis Foundation created the field of Crohn’s disease and ulcerative colitis research. Today, the Foundation funds cutting-edge studies at major medical institutions, nurtures investigators at the early stages of their careers, and finances underdeveloped areas of research. www.ccfa.org/chapters/westfield
“I became involved with the CCFA after my daughter, then 2 ½ years old, was diagnosed with ulcerative colitis,” says Lauren Baker. “Four years have passed, and she is thriving due to scientific advances that wouldn’t have been possible without the money raised by the CCFA.
We just held our annual Casino Night and we are gearing up for our Take Steps Walk in May. The money raised truly affects patients and their families and we look forward to a day when these diseases are a thing of the past.”
A Cure In Our Lifetime
The mission of A Cure In Our Lifetime is to fund innovative breast cancer research, provide resources for women who have breast cancer, and promote breast health through education and outreach. A Cure In Our Lifetime was formed in 1997 as a grassroots effort in response to the loss of a community member. The goal of the original seven committee members was to raise money to fight breast cancer. Since then, the committee has grown almost threefold and the organization has raised more than three million dollars in the fight against breast cancer. www.acureinourlifetime.org
“I recently celebrated my 12th anniversary as a breast cancer survivor,” says Laura Friedman. “I was diagnosed with breast cancer at the age of 32 when my first born son Josh was six months old. It was a rough year which we would not have been able to endure without the support of our friends, family and community. Around my five-year anniversary, I attended my first Chappaqua’s Cure In Our Lifetime event. It was such a wonderful and well-attended event that I reached out to the organization’s founder Karen Taub and asked how I could help in the future. I have now been on this committee for nearly seven years and so grateful to be working with remarkable women all committed to expanding our reach and allocating our funds to leading and innovative breast cancer research and support programs. Our event last year was attended by 260 women and we raised close to $180,000.”
Making Headway Foundation
Making Headway is a Chappaqua-based foundation dedicated to the care, comfort and cure of children with brain and spinal cord tumors.
Making Headway Foundation was established in 1996 by a small group of parents–Maya and Edward Manley and Clint Greenbaum–whose own children had undergone treatment for brain tumors.
tumors. They found that traditional hospital-based medical programs failed to provide essential humanistic services that enabled a child to reintegrate physically and emotionally with his or her family, school and peer groups. The founders of Making Headway wanted to provide other families with what they had found wanting–even with the finest medical care. In 2004, Dr. Jeffrey Allen and his Pediatric Neuro-Oncology Program team found a new home at the NYU Langone Medical Center. Making Headway Foundation now works closely with this hospital and its Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders As from the start, Making Headway continues to focus on three main components: Support at the Hospital; Ongoing Care; and Research and Cure www.makingheadway.org
“When I first walked into Maya and Edward’s home more than a decade ago to learn about Making Headway, they were strangers,” says volunteer Steffi Green. “but I quickly realized they were the warmest, most giving people in the world. For the first Greeley Football Walkathon five years ago, we challenged each player to raise $100 and walk on behalf of the kids. We’ve raised more than $10,000 every year since, and the players have extended their volunteering on a more personal level. They visit the children in the hospital and really get to know them. The kids look forward to these visits, which are a special break from their challenging treatments. This year, we’ve extended the fundraising and volunteer program to include the girls’ Field Hockey team, and they are just as motivated to make a difference.”
Heartworks Westchester
The Heartworks Westchester event was founded by Barbara and Jonathan Lerman, in honor of their beautiful daughter Sydney, who was diagnosed at birth with a very severe form of Marfan syndrome, a rare and potentially life threatening connective tissue disorder. Over the past four years, their community of family, friends and supporters has made a real and measurable difference for the children and teens who are served by the National Marfan Foundation. Contributions to this year’s event on June 15th will help fund specific programs for children and teens, including the NMF’s Annual Conference, which provides an environment for children affected by Marfan syndrome and related disorders to help build self-esteem, while offering educational workshops and fun activities that help build friendships that last long after the Conference is over. www.marfan.org/marfan/2839/Heartworks-Westchester
“I had never heard of Marfans until Sydney Lerman was born,” says Volunteer Stacy Carr of Katonah. “It has been so personally rewarding to be involved with a charity that is so close to my heart. As personal friends of the Lerman family, we witness first hand their incredible strength and ability to face the challenges that Marfans presents. What is particularly satisfying is the knowledge that the profits we raise at Heartworks are directly earmarked to benefit children who suffer from Sydney’s form of the disease, pediatric spontaneous mutations, the most severe form.”
Relay for Life
The American Cancer Society’s Relay for Life began in the mid-1980s in Tacoma, Washington. Dr. Gordy Klatt, a colorectal surgeon, wanted to raise funds for his local American Cancer Society’s office and to show support for all of his patients battling cancer. He decided to personally raise money by running marathons. In May, 1985, Dr. Klatt spent a remarkable 24 hours circling the track at the University of Puget Sound in Tacoma. He ran more than 83 miles, cheered on by 300 friends, family and patients. Throughout the night, onlookers donated $25 each to run or walk along with Dr. Klatt. That first event raised $27,000. to fight cancer.
Relay for Life now takes place on tracks across the country. Chappaqua’s Relay for Life will be held on May 19th at Horace Greeley High School. Important moments of the overnight, relay-style event will include the Survivor’s Lap, a Luminaria Ceremony to honor those who have been touched by cancer and to remember lost loved ones, and a Fight Back Ceremony. www.relayforlife.org.
Event chair Matt Re says, “I’m fully invested in Relay for Life for two obvious reasons. The first is that I lost my mom to a long fight with cancer in February of 2011. The second is that I want to do anything in my power to make sure nobody else has to go through it either. By bringing it to Greeley, we raise money and awareness by realizing how many people in our own community are affected by cancer. This is most evident in our Luminaria Ceremony where we have people break and light glow-sticks when prompted with their personal relationship to cancer: a friend, a relative, or themselves.”
A Children’s Brain Tumor Cure Foundation
Brain tumors know no boundaries and are not at all discriminatory. A Children’s Brain Tumor Cure Foundation, an affiliate charity of the PLGA (Pediatric Low Grade Astrocytoma) Foundation, is dedicated to finding more effective, less toxic and less punishing treatments for eradicating brain cancer in children.
When children are affected, an entire community is moved to action. That is the reality of the Think Fit for Kids event, which recently celebrated its second successful year. On Sunday, March 18th, nearly 400 participants and volunteers and over 20 local merchant donors joined forces at Club Fit in Briarcliff for a common goal of raising awareness and funds for children’s brain tumor research. www.achildrensbraintumorcure.org and www.thinkfitforkids.org
“The reason I became involved with A Children’s Brain Tumor Cure Foundation was to honor my own son’s courage and strength, while considering the many other children who were not as fortunate in their outcome,” says Think Fit for Kids founder Kim Gilman. “Brain tumors are the leading cause of tumor death in children under 20 and the current treatments are toxic and often ineffective. I knew that if this community could see just how many local families have been affected by pediatric brain tumors, together, we could make a difference for the kids battling this disease.”
Since it’s inaugural event last year, Think Fit For Kids has raised over $300,000, ($160,000 this year and still counting!) enabling A Children’s Brain Tumor Cure Foundation to fund cutting edge clinical research which we hope will lead to new, genetically based diagnostic and therapeutic tools and, ultimately, a cure for pediatric brain tumors.
Jennifer Leventhal is a Millwood based freelance writer and editor. www.jenniferleventhal.com
Giving Back: Save the Dates
May 19th: Chappaqua Relay for Life, 6 p.m., Horace Greeley High School. www.relayforlife.org
May 20th: Westchester Take Steps for Crohn’s & Colitis, 4:00 p.m., FDR State Park, Yorktown. www.cctakesteps.org/westchester
June 1st: A Cure In Our Lifetime event, 9:30 a.m., Trump National Golf Club. Featuring Breakfast, Silent Auction, Raffle, and Golf Outing. www.acureinourlifetime.org
June 1st: Spin To Win to Benefit Friends of Karen, 6:30 p.m., Saw Mill Club, Mt. Kisco. www.friendsofkaren.org
June 15th: 5th Anniversary Heartworks Westchester, 7:30 p.m., Crabtree’s Kittle House. Featuring the Journey tribute band Don’t Stop Believin’. www.marfan.org/marfan/2839/Heartworks-Westchester
June 26th: Holly’s Angels Gala to Benefit Making Headway Foundation, Cipriani, 42nd St., NYC. With Special Guest President William J. Clinton. For more information, please contact:
Catherine@makingheadway.org