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Disbursements Report: 2007
The One Small Voice Foundation closed its seventh fiscal year in August 2007 and is approximately half way through the 2008 fiscal year. We are pleased to announce that since its inception, (August 2000) the Foundation has donated $269,729.36 to research/education. The primary recipients were the Hydrocephalus Association, Childrens Hospital Los Angeles and Children’s Memorial Hospital Chicago for the very important research of hydrocephalus and optic nerve hypoplasia.
As a result of your generous donations, the fact that no one in the foundation accepts a salary and the generosity of our corporate sponsors—The Orion Group and its business partners ZGraphics, Genesis and Vision Mailing—nearly 100% of your donation goes to research.
The donations were distributed as follows:
- Childrens Hospital Los Angeles: $180,329.36 plus a Dell Laptop Computer ($1897.51)
- Children’s Memorial Chicago: $69,300
- Hydrocephalus Association: $16,600
- The Guild for the Blind: $3,500
Thank you all for your continued support. If it were not for your generosity we would not have met this incredible milestone.
From: Pamela Garcia-Filion
Research assistant to Dr. Mark Borchert
Childrens Hospital Los Angeles
Through the support of the One Small Voice Foundation, the ONH research study at Childrens Hospital Los Angeles has proudly taken the shape of a clinical research program for families with children diagnosed with ONH. Our research continues to grow and reach milestones demonstrating progress towards answering the many questions surrounding ONH.
In January, we were pleased to provide the One Small Voice Foundation with a preliminary findings report to post on-line to share with families the frequency and distribution of clinical risk factors and outcomes facing children with ONH. The details and statistics from our preliminary findings will be available through journal publications to follow—so keep an eye out for availability notification. These findings have directed our research attention to develop ‘carve out’ studies for further research of emerging issues, such as endocrine and developmental outcomes. We have also expanded the epidemiology branch of our study to explore the distribution of this disease in addition to the potential risk factors.
We are proud that, in addition to the research objectives, our study has grown into a resource-based, family-centered research program to provide support, information, easy access for physician specific inquiries and service referrals for therapy and education planning. We regularly receive calls from families, in and out of the research study, that have questions, need information or just simply need to talk. We are pleased to be able to provide this support and guidance in a coordinated and efficient manner. It has proven to be invaluable to our families everywhere and wouldn’t be possible without the One Small Voice Foundation.
Our appreciation for the support of the One Small Voice Foundation extends beyond words and can only be adequately expressed by our research and program efforts. The donations from the One Small Voice Foundation strengthen our ability to conduct research and serve as a resource to all families with children diagnosed with ONH—in and out of our study.
From: Emily Fudge
Founder, Hydrocephalus Association
The goal of the Hydrocephalus Database Project is to create a national registry that will enable the Hydrocephalus Association to collect, store and synthesize information on the diagnosis, treatment and incidence of hydrocephalus, as well as its lifelong impact on individuals.
For the past 16 years, representatives of the Hydrocephalus Association have attended and exhibited at the annual meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Pediatric Neurological Surgery. This is a three-day meeting held in various cities around the United States every December and attended by an average of 250-300 pediatric neurosurgeons. It is “the” professional gathering for neurosurgeons who have a focus and specialty in pediatrics. Past presidents of the Section include doctors Fred Epstein, Harold Hoffman, David McLone, Michael Scott, Harold Rekate and Marion (Jack) Walker.
Over the course of the three days, approximately 50 papers are presented—customarily about a quarter of these have to do with some aspect of hydrocephalus. Since 1989 the Hydrocephalus Association has presented the Resident’s Award to the best paper on hydrocephalus presented at this meeting.
At the 32nd Annual Meeting of the Pediatric Section in Salt Lake City in December 2003, the Association was invited to make a preliminary report on the Hydrocephalus Database Project. This was the first time that a nonprofit organization has been asked to address this prestigious body, which was both an honor for the Association and a recognition of the importance of the Database Project.
From: The Neurosurgery Team
Children’s Memorial Chicago
The Division of Neurosurgery provides services for every aspect of surgical disorders affecting the brain and spinal cord in childhood. All in all, it has been a busy and productive year for the program—both in the clinic and the laboratory. Since assuming chairmanship of the division a year ago, Tadanori Tomita, MD has focused much of his time on strengthening the neurosurgery team. In November, Dr. Arthur DiPatri was recruited from the University of Maryland. Dr. DiPatri, who previously trained in Children’s Memorial’s fellowship program, is skilled in the fields of spine and epilepsy surgery. Neurosurgeon Todd Alden, MD also will join the neurosurgery team in August upon completing his fellowship training at Seattle Children’s Hospital. Dr. Alden specializes in epilepsy surgery and will divide his time between surgical and research activities.
Research. While helping families cope with the day-to-day complications posed by illness is a primary concern of the Division of Neurosurgery, we also understand the only way to improve the level of clinical care is through the continued pursuit of new treatments emanating from research. Current clinical and basic investigations are:
- Examining the use of a procedure called third ventriculostomy for the treatment of hydrocephalus. This procedure involves the creation of a channel to reestablish the free flow of fluid within the interior of the brain
- Developing therapies for Chiari malformation, a benign structural problem affecting the cerebellum
- Studying long-term outcomes of youngsters impacted by severe neurotrauma and myelomeningocele (spina bifida)
- Examining the molecular biological mechanism of spina bifida
The division’s commitment to research is fostering the discovery, development and delivery of life-altering treatments and therapies.