Sydney Salem Golding Fund Blog
Click here to check out the new and improved SSGF Blog.
We hope that the new version of the SSGF Blog will keep everyone better updated on latest happenings with the causes that we support -- histiocytic disorders, neonatal disease and pediatric cancer.
We also will be posting details about our new partnership with the Texas Children's Cancer Center, an opportunity to support an exciting new research project and an upcoming announcement about a major gift that SSGF is making to support the outpatient pediatric cancer program at Rainbow Babies.
Rainbow Featured Partner
We are very proud and honored to announce that the Sydney Salem Golding Fund has been selected as a Featured Partner of the Rainbow Babies - Ireland Cancer Center.
This group includes the Lance Armstrong Foundation, St. Baldrick's Foundation, The Sunshine Kids, Flashes of Hope and other wonderful organizations supporting the "quest for the cure" at Rainbow Babies and the fight against pediatric cancer.
This partnership reflects our continuing commitment to support infants, toddlers and adolescents receiving in-patient treatment at the Rainbow Babies - Ireland Cancer Center. This achievement would not be possible without our wonderful donors and supporters whose generosity never ceases to amaze. We are blessed to receive such great support from so many wonderful people.
Tidings & Toys 2008
We want to express our appreciation to our friends, family and supporters for taking time to attend the fifth annual Sydney Salem Golding Fund holiday party on Saturday December 13, 2008, and for generously donating to our holiday toy drive.
We shared a wonderful evening of holiday cheer and treats with about 100 festive friends at The Old Angle Tavern and were able to collect over 200 new toys which will be delivered to Rainbow Babies and Children's Hospital for distribution to children spending their holidays in the Neonatal Intensive Care Unit, Pediatric Intensive Care Unit and Children's Cancer Center.
We cannot thank everyone enough for their generous support and for being so willing to help brighten the holidays for these children.
Once In A Blue Moon 2007
We appreciate and want to thank everyone who supported our fourth annual “Once In A Blue Moon” fund raising event which was held at House of Blues Cleveland. We shared a wonderful evening with old and new friends, family members and other supporters who helped us to raised approximately $25,000 for the Sydney Salem Golding Fund.
Your contributions will help us to continue and expand the efforts undertaken through the Sydney Salem Golding Fund to assist brave little warriors (and their families) who are being treated at Rainbow Babies & Children's Hospital with their battles against and recovery from illness and disease.
We are pleased to report that 100% of the money raised from the event has been donated to Sydney Salem Golding Fund and will be utilized to provide continuing assistance and support to infants receiving treatment in the Neonatal Intensive Care Unit and to young patients at the Children’s Cancer Center.
THE BIG WEEKEND 2006
The Sydney Salem Golding Fund was proud to provide underwriting support for the Histiocytosis Association of America and to organize a weekend of activities -- THE BIG WEEKEND -- highlighted by a national family/patient/physician conference on histiocytic disorders -- THE BIG MEETING -- which was held at Rainbow Babies & Children's Hospitals in Cleveland. Families also enjoyed social and networking activities including a pre-game picnic and baseball game, a trip to the Cleveland Metroparks Zoo and a party for conference attendees, presenting physicians and BIG FIX riders at a local Irish pub.
More than 160 adults and nearly 30 children (including families from Canada, China and Vietnam) attended this full-day conference which featured physicians from across the United States addressing the diagnosis, treatment and research of histiocytic disorders in panel sessions and discussing disease-specific issues in separate breakout groups. Information about the panel sessions and the breakout groups is available by clicking this link or going to the Histiocytosis Association of America website.
In addition to the main conference activities, a special program was developed for children attending the conference which featured movies, games crafts and a special edition Build-a-Bear. We also are grateful to Flashes of Hope for generously arranging photo shoots for families and their children during the conference and providing complimentary portfolios to each family.
The Sydney Salem Golding Fund also is honored to have assisted with a project envisioned by a wonderful histio parent, Maggie Markgraf, who assembled and created a book of personal stories from families with children who have histiocytosis.
The book is entitled Histio Histories (The Big Booklet of Histio Kids) and features the stories and pictures of more than 80 children with various forms of histiocytosis from across the country and around the world. The book was distributed to families who attended THE BIG MEETING and to families who shared their child's story.
We hope to continue and to expand this project in the future so that other histio families can share their stories and experiences in dealing with histiocytosis.
HAA Fundraising Efforts
The Big Fix was a cross-country bicycle ride which traveled from Davis, California to Boston, Massachusetts with the goals of increasing awareness about histiocytosis and raising money to support histiocytosis research. The riders not only completed their amazing ride, but raised over $300,000 for the Histiocytosis Assocaition of America. You can check out The Big Fix website to learn more about this epic undertaking and how to support this great effort by purchasing a DVD copy of THE BIG FIX Movie.
Hike For A Cure is an annual fundraising event for the HAA Research Program which requires participants to complete an 18 mile hike up and down the legendary Half Dome in Yosemite National Park. During the past nine years, Hike For A Cure has donated in excess of $750,000 to the HAA to fund grants for research into histiocytic disorders. We are proud to support Anton and his parents in their wonderful efforts!!!!
SYDNEY SALEM GOLDING FUND
"Why this happened we may never know completely,
but what we do know now is that all of us have an angel among the moon and
stars to watch over us. Sydney, our sweet angel, please promise to love and
watch over us, just as we will promise to miss you, remember you, and love
you, every day for the rest of our lives."
Sydney Salem Golding blessed us with her entrance
into the world on November 1, 2001, the morning after a Halloween full moon,
and decided to end her brave struggle on November 29, 2001, the day of another full moon. Sydney
died from liver failure and other complications of a rare histiocytic disorder called systemic juvenile xanthogranuloma
(JXG) which had affected her since birth.
She received treatment in the Children's Cancer Center before being discharged home and then spent the last ten days of her
life in the Neonatal Intensive Care Unit (NICU) at Rainbow Babies and Children's Hospital
in Cleveland, Ohio,
where she was surrounded and supported by her family and their
fought bravely against her disease with everything she had -- enduring chemotherapy, countless tests and numerous invasive procedures. She touched and inspired everyone who met her by displaying courage, strength and toughness well beyond her
size and her years.
Words cannot fully convey the joy and love that Sydney
brought us during every day of her life, nor the heartbreak that we have
experienced every day since her passing. However, her courage and strength
has inspired us to celebrate her life and to honor her memory by helping
other brave little warriors who face similar struggles.
more about Sydney...
Histiocytosis is a generic name for a group of disorders characterized by an abnormal increase and accumulation of certain immune cells known as histiocytes. A histiocyte is an immune cell which normally can be found in the skin, lungs, liver, spleen, lymph glands, bone marrow and blood stream. In patients suffering from histiocytic disorders, these histiocytes increase in number and cluster together in the form of lesions or tumors and can sometimes move into areas of the body where they are not normally found.
Histiocytosis can attack the skin, bones, eyes, lungs, liver, spleen, heart, brain, bone marrow and the central nervous system, with presentations which can range from limited involvement (a single skin or bone lesion) that spontaneously regresses to progressive
multi-organ involvement (lungs, liver and/or central nervous system) that can be chronic and debilitating. In some ways, histiocytosis
is similar to cancer and has historically been treated by oncologists with
chemotherapy and radiation. The vast majority of people (76%) diagnosed with histiocytosis are children under the age of 10, but it
is also found in adults of all ages. It is approximated that histiocytosis affects 1 in 200,000 children born each
year in the United States. Because it is so rare, histiocytosis is often referred to as an "orphan disease," meaning it strikes too few people to generate government-supported research.
Systemic juvenile xanthogranuloma (JXG) is an even rarer histiocytic disorder which is estimated to affect only 1 in 10,000,000 children and which is characterized by histiocytic lesions which can infiltrate the skin, soft tissue and internal organs. These lesions, depending on their quantity and location, can affect the function of various organs -- as well as the patient's immune system. In some cases, the lesions can heal spontaneously but often require treatment with chemotherapy and corticosteroids. In more serious cases, the lesions can cause permanent damage and can even be fatal when multiple organ systems are involved. We learned soon after her birth that Sydney unfortunately suffered from a severe and extremely aggressive form of systemic JXG involving lesions which infiltrated her lungs, liver, kidneys, pancreas, spleen and digestive tract. She bravely endured chemotherapy and
other treatments in a heroic effort to stop the lesions from spreading, but
ultimately succumbed to the effects of this terrible disease.
more about Sydney's battle with JXG...
About The Fund
We have established the Sydney Salem Golding Fund
at Rainbow Babies and Children's Hospital to honor Sydney's
brief life and heroic struggle.
The fund provides assistance to newborns (and their families) being
treated in the Neonatal Intensive Care Unit (NICU), as well as infants and adolescents undergoing in-patient treatment at the Children’s
Cancer Center. These
innocent and brave warriors who are fighting their own private battles against
disease and illness deserve help through their time of need. We hope
that this fund can be used to bring the same feelings of love, caring, and
happiness to other brave little warriors as Sydney
brought us during her life.
The NICU is a modern 38-bed intensive care unit (one of the largest in the country) which provides care for newborns and infants with complex medical problems and which is staffed by an array of specially trained and certified physicians, nurses, nurse practitioners, therapists and other specialist consultants. The NICU has approximately 1500 admissions each year, including close to 200 infants with birth weights below 1.5 kilograms, and a broad variety of complex patients often referred from other hospitals in the Midwest. As a Level III neonatal intensive care unit (the highest level available), the NICU treats premature infants and critically-ill newborns affected with other conditions including cardio-respiratory disorders, birth defects, inherited metabolic disorders, infections, neurologic problems, gastrointestinal and hematologic disorders. The NICU was recently rated by Child magazine as the number two program in the country and is one of twelve units nationwide that the National Institutes of Health has designated as a Neonatal Research Center.
The Children's Cancer Center is the pediatric component of University Hospitals of Cleveland's Ireland Cancer Center and provides care to patients through an integrated team which includes board-certified pediatric hematologists-oncologists, pediatric oncology nurses, nurse practitioners, child life workers, social workers, psychologists and multiple pediatric medical and surgical subspecialists.
Inpatient care is provided on the 20-bed designated oncology floor located on the second floor at Rainbow where a "rooming-in" program permits parents to stay with their children at all times during treatment. The inpatient unit has a specialized air filtration system in patient rooms, treatment rooms, playrooms and common area which is designed to provide extra protection against the spread of infection and to prevent patients from being confined to their rooms. As a member of the Children's Oncology Group (a cooperative oncology research group supported by the National Cancer Institute), the Children's Cancer Center has access to investigational drugs from several sources and can enroll patients in national clinical research treatment protocols.
We have used money donated to the fund to purchase
much-needed items for the NICU and the Children’s Cancer
Center, including books,
cameras, toys, videos, rocking chairs and toy chests. The event proceeds also have been used to purchase digital cameras so that families can record their time together in the hospital and share images with family members who cannot be present. We recently purchased transcutaneous bilirubin monitors which will permit nurses to obtain critical readings from infants without need for using needles to draw blood. We also have maintained our commitment to underwriting an annual memorial service at Riverside Cemetary for parents who have experienced fetal loss during the preceding year.
We are proud and honored to be able to support this program and to provide assistance for other brave little warriors and their families with their struggle against and recovery from disease, illness and injury. We sincerely appreciate everyone’s generous support of our efforts and welcome your continuing participation.
If you would like to contribute, please make your check payable to:
Sydney Salem Golding Fund
c/o Rainbow Babies and Children's Hospital
Department of Development -- UC Stop 5062
11100 Euclid Avenue
Cleveland, Ohio 44106-5062
All donations to the Sydney Salem Golding Fund and Rainbow Babies & Children's Hospital (Federal Tax ID #34-6532528) are tax-deductible. You also will receive a receipt from Rainbow Babies and Children's
Hospital acknowledging your donation.
About The HAA
Association of America (HAA) provides information about histiocytic diseases, financial support for research
efforts, as well as emotional support for parents and patients living with
these diseases. The Histiocytosis Association also serves as the administrative office for the Histiocyte Society, an international organization of physicians and scientists dedicated to the research and treatment of histiocytic disorders. This relationship allows the Association to have access to the most recent advances concerning histiocytosis and enables members of the Association to have contact with some of the world's pre-eminent physicians.
As we have learned more about the histiocytic
disease that took Sydney from
us, we are now turning our attention toward working with the Histiocytosis Association of America to fund scientific research and clinical trials in hopes of finding more effective ways to diagnose and provide
treatment for other children with histiocytic
disorders. The goal of the Histiocytosis Association's Research Program is to establish better treatments and a cure for those affected with the histiocytoses and ultimately to effect the prevention of such diseases. To date, over 80 research projects have been funded into various areas of histiocytic disorders.
Our long-term goal is to create a research fund that will focus exclusively
on finding the underlying causes for JXG so that this disease can be better understood and more effective clinical treatments can be developed. This project is a major undertaking, which
will require a great deal of time and effort, but could have far-reaching
impact in the future. If you would like to support this effort, please make
your check payable to Histiocytosis
Association of America and be sure to include the following note in the
memo area: "In memory of Sydney Salem Golding,
designated for the research fund."
You can mail your contribution to:
Histiocytosis Association of America
332 North Broadway
Pitman, New Jersey 08071
All contributions to the Histiocytosis Association of America (Federal Tax ID #22-2827069) are tax-deductible. Each donor will receive an acknowledgment card and a receipt for tax purposes directly from the HAA.