ECCF’S FAMILY OF FUNDS
brendan tobin memorial fund
The Brendan Tobin Memorial Fund’s purpose is to raise money for a clinic for Klinefelter Syndrome/47, XXY to be established at a major hospital in the Boston, MA area. This clinic will draw from an expert medical community of informed geneticists, pediatricians, endocrinologists, reproductive experts, speech therapists, psychologists, psychiatrists, social workers, and others in the medical realm, and care for males with KS from birth through adulthood.
Our son Brendan was a compassionate young man who loved to help others, sing, play cards and chess, run Spartan Races, and play ultimate frisbee. However, beginning around puberty, he had anxiety and depression. Diagnosed with ’47, XXY,’ also known as Klinefelter Syndrome, at fifteen, neuro-psych tests revealed socio-cognitive, expressive language, reading, processing speed, word-retrieval, executive function, impulse and inhibitory control issues. Sensitive, a bit shy, several years less mature than his peers, Brendan struggled socially. A social thinking test placed him in a group called the Weak Interactive Social Communicators- putting him at further risk for anxiety and depression.
Despite his struggles and vulnerabilities, Brendan was moving forward to meet his many challenges. Yet, we lost him to suicide at age 19. Our broken hearts will never fully heal, but as our deep love for Brendan lives on, so does our determination to help other boys who struggle with challenges due to Klinefelter Syndrome. Klinefelter Syndrome is a Sex Chromosome Aneuploidy that occurs in 1 in 500-650 boys. Along with other brain function challenges, which vary by person, 60-70% of males with 47, XXY suffer from anxiety and/or depression.
Being a syndrome, symptoms vary by individual- though infertility, taller stature, longer arms and legs, weak bones, weak muscle tone, lack of muscle development or facial hair, weak tooth enamel, lower energy, and other physical, hormonal, neuro-cognitive, psychiatric, and social issues can occur in many. Testosterone replacement therapy is usually begun in puberty but studies so far show testosterone replacement therapy still doesn’t seem effective in addressing some of the psychosocial and other brain issues. In some boys, speech delays, immaturity (can be 4-5 years less than actual age), expressive language, executive function, inhibitory and impulse control, sensitivity (both sensory and over-emotional reactions), reading and other learning disabilities including ADD, ADHD, Autism, Asperger’s Syndrome, as well as Epilepsy and higher risks for diabetes, osteoporosis, thyroid problems, and high cholesterol can all exist along with Klinefelter’s, making life even more challenging.
The earlier a diagnosis is made, the better the chance a young boy has for a happy, successful life. Currently, the nearest clinic is well outside New England. This new clinic will be invaluable to so many boys and their families and help increase their quality of life physically and emotionally–and potentially make all the difference. Thank you for your generosity.