Member Spotlight
Bob R. Legere Memorial Fund
Upon the recent passing of her husband, Bob, Janice Legere established a memorial fund in his name to honor their granddaughter, Christina, who has Chiari malformation. Thank you to Bob's family for their generosity in creating this memorial fund and for donating $1,420 to CSF. Following is a letter we received from Janice Legere...
Camilla and David Martin Wedding
Camilla and David Martin reside in New York City and were recently married in Dublin, Ireland. Camilla is from Stockholm and David is from Dublin, so they decided to have their wedding reception there. Camilla was diagnosed with Chiari malformation about three years ago and had surgery in December 2006. Unfortunately, it was not successful but she does her best every day. She and David have been running Fi, an internet company which delivers premium interactive services and media platforms, for the past ten years. In lieu of wedding gifts, the couple decided to ask their guests to donate to CSF, in their honor. CSF has received almost $1,400 from their family and friends. Thanks Camilla and David and best wishes from CSF!
UPS Fundraising Through the United Way
I was born with a Chiari malformation. Throughout my life, I have dealt with many medical problems, ranging from allergies and chronic infections to more recent and serious problems. To date, I suffer with about 90% of symptoms. Because of its degenerative nature, not only do I have Chiari, but I also have spinal canal stenosis, kyphosis, obstructive sleep apnea, COPD, and degenerative disc disease, to name a few, so far. Unfortunately, it was only until young adulthood that I was accurately diagnosed with Chiari malformation. In turn, I may be suffering from latter illnesses that may have been prevented, if more education were available. When I was diagnosed, I was a single mother attending college while casually dating my current boyfriend, Matthew McHenry. Ten years ago, we really had no idea what kind of beast we were facing. Chiari malformation, and its related disorder, syringomyelia, could be a very debilitating illness in which permanent damage occurs. Because of their location near the hindbrain, too often enough, symptoms could be disabling. Unfortunately for myself and people who are in my situation, some symptoms will be permanent.
On August 18, 2009, Matthew McHenry, as an employee representative to UPS, invited Dorothy Poppe from the Chiari & Syringomyelia Foundation to present UPS with a United Way Fundraiser. Thanks to the efforts of Dorothy Poppe and the love of my life, Matt, UPS definitely came through to not only fund research, but to be made aware of these disabling conditions. They were willing to sacrifice time out of their very intense and hectic workday, and for that alone I commend them. But for designating the CSF as their United Way contribution I consider them to be my heroes. I personally can not thank them enough for all they did for this fundraiser. The guys at UPS are wonderful!
With support like this, maybe one day, we will live to see pain free days!
-Sabrina Stabile
Thanks to Sabrina and Matthew and to the UPS employees for donating $6,500 and for their support.
"Pins & Lemonade" Fundraiser
Eight year old Zoe, who lives in Rome, New York, has been raising money for CSF since last year by selling angel pins and lemonade at a stand she sets up every summer. Zoe's letter...
Thanks Zoe for all of your hard work and your support!
St. Raphael's Parish Sports Program
Tom Dolan currently runs the local CYO sports program at St. Raphael’s Parish in East Meadow, NY. (Pictured are St. Raphael's 5th Grade Team, coached by Tom Dolan and Brian Kavanagh) Tom is cousin to Paul Farrell, CSF’s Chairman, who grew up and played in these programs when he was young.
Every year, Tom runs a tournament to help raise funds for various repairs and to subsidize costs for families in the sports program. This year, Tom has decided to give back to charity and has chosen CSF to receive a donation of $500 from the CYO program.
“We appreciate all of your efforts and are glad to help CSF in any way we can.”
-Tom Dolan
Pay It Forward Fundraiser
Four 7th grade girls from the Incarnate Word Academy, in Parma Heights, Ohio, decided to help raise money for people with Chiari malformation and syringomyelia. Hailey has known Calvin and Brent Poznik, both of whom are affected by Chiari and syringomyelia, and has followed their struggles. When the “Pay It Forward” project, a volunteer project to help people in need, was introduced at her school, she enlisted the help of three other girls and they decided to earn money for CSF.
(Pictured are Diana, Hailey, Calvin Poznik, Brent Poznik, Pallavi, & Maggie)
The girls raised money for their project by collecting donations from family and friends, collecting donations at Bingo night, babysitting, selling homemade knit scarves and holding a hot lunch raffle at the school. The hot lunch raffle was a raffle in which students purchased raffle tickets and two of them won hot lunches at school for a week. This raffle raised $400. In addition, the students collected $200 in donations at Bingo night.
On July 26, 2008, the girls presented CSF with a check for $1,020. They were excited to have exceeded their goal of raising $1,000 for our cause.
Thank you for "paying it forward" to CSF!
I TRI for CSF
On September 14, 2008, Patty Kosty participated in her first triathlon, competing in a half mile swim, 12 mile bike ride and 3 mile run to raise funds for CSF.
Patty trained since January 2008 and her goal was to finish the race and have fun doing it! Patty's brother, Paul Farrell, CSF's Chairman and Founding Member, has suffered with syringomyelia since 1989 and her cousin, Erin, was recently diagnosed with Chiari malformation.
"This race is a huge challenge for me but nothing compared to the daily challenges my brother faces as well as the quarter of a million people who suffer from SM and CM."
-Patty Kosty
Thanks to Patty for raising almost $2,000 for CSF.
Conquer for Kaya
September 22, 2008 marked our first "Conquer for Kaya" CSF Golf Tournament in San Antonio, Texas which raised over $36,000 for research so people like Kaya can lead normal and pain-free lives.
The delicious dinner was, once again, donated by Scenic Loop Cafe in San Antonio and sponsors included Speedway Erection Co. and Urban Concrete. Thank you also to San Antonio Jewelry for generously donating a beautiful watch for the auction and to EDP Concrete, Laubach Tile, and Ridout, Barrett &Associates for their generosity. We would like to thank all of the sponsors and golfers and those who came to enjoy dinner and to shop.
"Conquer for Kaya has had the opportunity to touch lives and offer support to families affected by Chiari and syringomyelia. And we couldn't have done it without all the support we have had from our friends and contributors"
-Debbie Culver
The 4th Annual Conquer for Kaya Charity Golf Tournament and Dinner will be on September 22, 2009 and we hope you will be able to join us!
Visit www.ConquerForKaya.net for more information.
Bake Sale
On the second Saturday in October at Thunderhart at Sunny Hill Golf Club in Greenville, New York, Hannah Smith, age 8, also of Greenville, held a bake sale with goodies such as sugar cookies, chocolate chip cookies and fudge cookies and successfully raised $500 for CSF to "help find a cure".
Miss Smith has held bake sales before and has always been very successful, donating the funds on behalf of her good friend, John Hartnett.
Thanks Hannah for your hard work and dedication!
Cure For Chiari Benefit
Thank you to Peg Curtacci and her “Cure for Chiari Benefit”, held on November 2, 2008. They raised and generously donated $1,000 for the CSF Marcy Carlson Speer Endowment Fund.
Since 2001, Peg, her family, friends, and community have hosted a fundraiser to support Chiari research. In 2002, the members of Robert’s Post 160 in Holland Patent, New York and their auxiliary members joined the efforts. For the last seven years, they have gathered in November, at the American Legion in Holland Patent, to share a great meal, dance to the music of DJ Paul Gleba, and hope to win one of the beautiful raffles donated by family and friends. Every item, from food to music, is donated by family and friends. This enables them to use all the profits to help those with Chiari and related disorders. They also have a cash prize which frequently is generously donated back.
Included in their 2008 raffle was a handmade quilt, which is now a traditional raffle item. Friends also collected returnable cans on their daily walks and used the receipts to purchase lottery tickets for a Lotto Tree raffle.
“As I told my family and friends, I wish this was the last year I would be asking for their help, but I know that I will need their help for years to come as we search for a CURE.
"It is the children who inspire me. Our family is blessed with many healthy, bright and fun children. The children whose parents call me for help with Chiari are bright and fun but sick and in pain. So my Chiari journey must continue."
"As I advocate for those with Chiari, it will continue to be my faith, family and friends that sustain me.”
-Peg Curtacci
