Hello, my name is Lynzee Bissell and I am 11 years old. Three years ago I received news that would change my life completely. It turned out that my mom was diagnosed with Chiari Malformation. As a result, it has made a huge impact on everyone in my family. My brothers and I were shocked from the news and were scared of what Chiari could do to our mom since we had never heard of this disease.
I have done a lot of research and I am probably one of the few kids in the world that knows that Chiari Malformation is a condition in which brain tissue extends into the spinal canal. This seriously damaged my mom because she used to be so active, an amazing chef, and had an amazing job. Now, she stays home all day, alone, until my dad or I get home. She just had surgery in February and is still recovering. My mom also has to go to physical therapy. She comes home exhausted and has to sleep. I just can’t believe that Chiari can do this to one person. My mom is my hero and I wanted to raise money for this cause, so that is why I wanted to get the ODY Learn and Serve Club involved
The ODY Learn and Serve Club is a group of 4th -6th graders who give their time and talents to help others. One of the service projects that we do annually is to have a bike-a-thon. Money is raised by club participants getting sponsors who will donate money for them to ride their bicycles 10 miles. I am so proud of the Learn and Serve Club for choosing this foundation and for raising $371.
Hopefully I can raise even more money over the summer and I will ride my bike as much as I can for the Chiari and Syringomyelia Foundation.
Cathy O'Grady lost her mother to breast cancer in 1997 after a 20-year battle. She spent a number of years looking for a way to honor her mother's memory and for a way to help others honor loved ones who were also battling. In early 2010, she put her creativity to good use and started making hand-crocheted beaded bracelets. Friends convinced her to start a business, and in April 2010, she launched Cathy's Creations. Cathy has never been one to turn down a cause, and she started taking custom orders nearly from the start. If a person wanted an awareness item, regardless of how known or rare, she would make one for them. The line has spread from bracelets to include pendants, rings, keychains, watches, earrings, and other types necklaces as well. Popularity grew, and she saw her jewelry as a way to help people not only wear something beautiful in honor of their loved one, but also to raise money for the charities themselves. She started donating proceeds from cause items directly to the charities they were named for.
Cathy has never believed it to be right to make money off of sick children, so she made the decision early in her career that she would donate 100% of the profits of the cause items. She started a line of "for profit" items to help fund the business and keep the business going. As of February 2013, Cathy's Creations employs 4 people part-time (not counting Cathy), and has donated over $30,000 to various charities and families in need all over the US like the Chiari & Syringomyelia Foundation (CSF). These gifts have been the most rewarding part of the work Cathy's Creations team does each month. The company truly believes in giving back and is honored to work with CSF to help raise awareness and donations for such a worthy cause.
Sweet Sixteen Friends
It was in December 2008, nine year old daughter, Olivia, was diagnosed with a Chiari Malformation and Syringomyelia. On June 8th 2010, Olivia underwent decompression surgery to correct her herniation. February 2, 2012, Olivia then had to undergo spinal fusion surgery to correct a 73 degree curvature of her spine due to the presence of severe scoliosis which was a conditional result of her Chiari and syrinx.
Olivia's sister, Sarah, and her good friend Taylor, celebrated their sixteenth birthdays with a joint "sweet-sixteen" birthday party on January 5th. In lieu of gifts, Sarah and Taylor chose to receive donations for the Chiari & Syringomyelia Foundation, on behalf of Olivia and all of those that have suffered and continue to suffer from these conditions.
Olivia and Sarah's mother states, "As a family that has had to watch Olivia endure these two surgeries from a condition that has little explanation as to why and how it affects those that are diagnosed with it, I could not be more proud and thankful to Sarah and Taylor who chose to represent Olivia and the many others that suffer from these conditions."
CSF thanks Sarah, Taylor and their families for their generosity and support!
Bethany Hyer works at the Renaissance Faire in Strang, Oklahoma, Spirit of Magic and will be collecting donations for CSF at the Faire on May 5th and 6th, 2012. She will be promoting the Faire through public appearances prior to the event and will be collecting donations at those appearances as well.
Bethany is personally affected by Chiari malformation as her mom has been living with the disorder for the last nine years. "In 2003, when I was 14 years old, my mom went from being a normal, happy, (mostly) healthy person to becoming very ill and not herself seemingly overnight. My mom was 33 years old and went from being able to have outside time and fun with her children, to lying in bed, unable to move due to the pain radiating throughout her body. There was absolutely no rhyme or reason for this-the headaches, the body aches, the illness. After many tests, she still had no answers. Mom was put on morphine for the pain but even with all this morphine, the pain was still there. Doctors continued doing tests and were unable to find any answers. My mom lost 95% of ability in both of her legs, and she became wheelchair bound. She also lost 60% of ability in her arms, to where even holding a cup was a chore. Finally an answer came. Doctors finally realized that my mom had Chiari Malformation type 2, and surgery was necessary. Unfortunately, due to the damage of Chiari Malformation she is completely disabled. She was able to get her Disability dog Sally (pictured with Bethany's mom), whom she loves like a child. I will never have my mom, who could run, dance, play, and do everything she wanted, back. We thank God every day that we found a doctor who was able to ease her suffering, from this horrible, crippling disease."
Dairy Queen Night
Thank you to the Twinsburg Dairy Queen and all those that came out to support the Chiari & Syringomyelia Foundation (CSF) DQ Fundraiser. To date, the CSF Cleveland Chapter has been able to raise almost $1,900 during the past few years with these DQ nights. We appreciate DQ including us in their fundraising program and look forward to more DQ nights.
Round Table Pizza Takeover
One March 23, 2011, volunteers from the Northwest Regional CSF chapter participated in a pizza takeover event at. The volunteers bussed tables, washed dishes and delivered pizzas. We raised close to $900 between cash donations and proceeds from Round Table. Thank you to all that bought a pizza and to Round Table Pizza for assisting in this fundraising effort. Special thanks to our volunteers: Teresa Milosevich (along with Paige and Seth), Heather and Jami Cottier, Connie Farbo and Nick and Sheena LaShomb.
Rite-Aid Cleveland Half Marathon
A big smile lives on the face of Mary Beckwith as her head no longer hurts and her ears no longer ring.
"I haven't felt good all my life," said the 26-year-old who had balance problems, head aches and other issues that she adjusted to on a day-to-day basis.
The symptoms accelerated in August and Beckwith ended up on an extensive diagnostic search to see what her problem might be. "I got really sick back in August and it wasn't the normal sickness. My body wouldn't function," Beckwith said.
After a pulled muscle and vertigo were ruled out Beckwith was referred to a specialist by her family doctor.
"I was diagnosed with Chairi Malformation back in August," Beckwith said. On Jan. 20 Beckwith had brain surgery, which is the only way to alleviate the symptoms in severe cases. She said the symptoms may come back or they may not.
"As part of my recovery I am planning on running the Rite-Aid Cleveland Half Marathon. It is hard, even for my doctor, to believe that I am going to take on the 13.1 mile journey just 16 short weeks after brain surgery. I am dedicating these 13.1 miles to the Chiari & Syringomyelia Foundation as my thank-you," she said.
Mary will be running for CSF on May 15, 2011, less than four months after her surgery. Good luck Mary and thank you from the entire CSF family!
Money was raised for the CSF Cleveland Chapter by selling string, mulligans, anywhere tees, and drinks. Additionally, many individuals contributed beyond their purchases. A total of $1,700 was raised. Thank you to those who participated for their generosity.
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!
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."
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.
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."
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"
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!
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."