Blarney Cup History
The Founding of the Blarney Cup On a cold Thursday night, in mid February 1998, Jim Brown, Brian FitzGerald, and Tom Slater sat in The Chagrin Valley Hunt Club Paddle Hut to relax after a night of paddle. All the other ladies had headed home, but these three were determined to finish the beers that had been left. As this number grew smaller, the ideas became bigger. One came up with the idea to have an end of the year tournament. Yes, a grand plan, a tournament of all the Thursday night regulars to finish off the winter. When shall they hold it, and what should it be called? These questions required a couple more beers to answer. The when was much easier to answer, mid March would be the time to fit in their schedules, but the name was more elusive. More beers greased the wheels and names were bantered about, and finally someone, as everyone was unable to remember who, came up with the name BLARNEY CUP. Ah, Blarney, the perfect name for this tournament – the Irish term for bullshit. And so, the tournament of champions was born. Since the humble beginnings, the cup has grown to include more than 171 players and 26 Champions over 21 years.
After 13 successful years as a tournament that was focused solely on fun and debauchery, we decided to make the tournament about a little bit more. We decided to turn the Blarney Cup into a charitable event to raise money for a cause that is very close to our hearts. Our oldest son, Andrew, was diagnosed in 2007 with a neurogenetic disorder called Angelman Syndrome (AS).
Blarney for Angelman Foundation
After our first two years raising money for Angelman Syndrome through our Blarney Cup paddle event, we decided to step up our fundraising game and establish our own foundation that would give us more control and streamline our efforts to gather donations from family and friends. In 2013 we received approval from the IRS to recognize the Blarney for Angelman Foundation as a 501(c)(3) charitable entity. This allows us to offer our donors a tax deduction and helps spread the word about our cause. Our tax exempt ID number is:46-2002307.
Mission
Blarney for Angelman Foundation’s primary purpose is to raise funds to support research, educational and other efforts of like-exempt organizations with a common mission to assist those with the rare genetic disorder of Angelman Syndrome (AS). We will conduct at least one annual fundraising event where we will provide a brochure describing AS. This brochure includes information on the features and characteristics of AS, diagnosis, importance of early intervention and therapies, contact information for physicians and other allied health professionals as well as contact information for national and international Angelman Syndrome organizations and their websites.
Blarney for Angelman Foundation may, on occasion, support other local and national charities that have similar interests and goals. This includes the national Angelman Syndrome Foundation.
Angelman Syndrome and the Angelman Syndrome Foundation
Angelman Syndrome
Angelman Syndrome (AS) is a neuro-genetic disorder that occurs in 1 in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. AS occurs randomly and happens when there is an abnormality/defect in Chromosome 15. There is a lot of scientific language that goes into great detail about AS, but to summarize – AS is characterized by global developmental delays, speech impairment, movement or balance disorders, sensory-motor disorders, seizures, strabismus, low muscle tone and a variety of behavioral issues. There is a big advantage with AS in regards to research, and that is the defects are found in just one gene, as opposed to the many possible causes for something like autism. This advantage allows the researchers to focus on this gene and to try different methods to fix this – similar to knowing which fuse needs to be changed, as opposed to most East Side homes where the fuse box needs its own map.
People with AS do not have the gene product UBE3A produced in neurons in the brain. Without UBE3A, the neurons can’t function correctly. Because of this, individuals with AS have severe difficulties with learning and with the use of their bodies. Since the neurons can’t function well, these individuals lack the ability to speak and have life-debilitating seizures. But because we know exactly what is wrong in Angelman Syndrome, we know what to focus on to find a therapeutic – something that will restore UBE3A function to neurons. Research indicates that the brain and the neurons form correctly in an individual with AS. This is a critical piece of information because it indicates that the neurons could function normally if UBE3A function can be restored. As an analogy, if we think of the brain as a car engine, the brain of an individual with UBE3A has all the pieces and parts in the right places – nothing is missing. However the engine runs poorly since it can’t be properly tuned. UBE3A appears to act as a tuning mechanism to allow a neuron to function at its fullest potential.
There is a lot of excitement in the AS community over the advances in science that have shown the possibility of a cure through animal modeling. Mice that are bred without UBE3A in the brain display many features of AS including learning difficulties, balance and movement disorders, and seizures. Research has shown that modifying other gene products in these mice can alleviate all of the symptoms of AS! Recently, research has found that restoring a functional UBE3A protein into the neurons of adult mice with AS can rescue the learning defects and balance and movement disorders as well. This suggests that if we could restore UBE3A function in the neurons of individuals with AS, they too could see improvement of their symptoms. Curing Angelman Syndrome would open a gateway for curing other neurological disorders including autism and Alzheimer’s Disease. A therapeutic for AS will teach us about how neurons function and learn; knowledge required to restore function to a brain damaged by injury, stroke or disease. It may also provide therapeutic strategies to increase neuronal function in similar disorders such as Rett Syndrome and Fragile X Syndrome.
Angelman Syndrome Foundation
Mission
To advance the awareness and treatment of Angelman Syndrome through education and information, research, and support for individuals with AS, their families and other concerned parties. The ASF exists to give all of them a reason to smile, with the ultimate goal of finding a cure.
History
Founded in 1989 by Dr. Charles Williams, a pediatrician, clinical geneticist and Angelman syndrome researcher, the Angelman Syndrome Foundation was originally created as a research-focused organization called the Angelman Research Group. Recognizing the needs of families, the Angelman Research Group evolved into the Angelman Syndrome Foundation providing support services to and advocating on behalf of families of individuals with Angelman syndrome.
- Provided information, support services and programs to more than 250,000 individuals with Angelman syndrome and their families
- Hosted more than 215 National Walks, the organization’s largest fundraising event, attended by more than 60,000 individuals since 1999
- Funded $6.2 million in research grants and fellowships since 1996
- Assisted in opening two Angelman syndrome clinics to provide comprehensive medical care to individuals with Angelman syndrome
Research
The Foundation sponsors AS research through grants to researchers who pursue promising avenues of discovery. Since 1996, the ASF has funded 66 research grants totaling over $4.6 million. The ASF has awarded a majority of these funds ($4.5 million) beginning in 2005.
Education & Information
ASF is a national 501(c)(3) organization dedicated to helping families, care providers and medical professionals arm themselves with as much helpful information about Angelman syndrome as possible. The ASF sponsors a biennial conference which gives one the opportunity to hear the latest research results, therapeutic techniques, educational strategies, long-term planning and financial-planning information. The conference also offers many networking opportunities to talk to families that are dealing with the same issues one might be having while caring for an individual with AS.
Facts About Angelman Syndrome – General overview of the many complex issues of Angelman Syndrome.
Make a donation directly to the Blarney for Angelman Foundation via Paypal.
Your donation is 100% tax-deductible.