For Immediate Release
Contact: Mary Beth Kiser – 512-275-2600 – mbkiser@beyondbatten.org
Amy Phillips – 614-657-7707 – amy.r.phillips1@gmail.com
Columbus Family Creates Fund to Support Research for Fatal Childhood Illness: Beyond Batten Disease Foundation Announces the Addition of Hugs for Hudson Fund, Founded by the Family of Hudson Phillips.
Austin, Texas – April 6, 2016 – BBDF is proud to welcome the Hugs for Hudson Fund. BBDF, the world’s largest funder of juvenile Batten disease research, is able to make informed decisions about research projects that have the highest likelihood of becoming therapies. When a fund is created through BBDF, founders are offered an array of projects that are in line with their goals of driving research to finding treatments and discovering a cure, and are able to apply funding to the research areas that interest them the most.
Hudson Phillips lives in Ohio with his father Eddie, his mother Amy and his brother Grant. He is an energetic, funny, smart, inquisitive, talented and compassionate child. Like most 7-year-olds, Hudson enjoys friends, parties, riding bikes, sledding, swimming and playing in the snow, the sun and the rain. He loves smelling flowers, wearing cologne and trying every new food at least once. Hudson also has an amazing connection to animals.
By the time Hudson started kindergarten in August 2014, his vision had rapidly declined. In November of 2014, Hudson began DNA testing to determine if he may have an extremely rare neurodegenerative disease, which among many other symptoms, causes rapid vision loss.
Sadly, the Phillips family was given the worst possible news they could hear: Hudson’s DNA testing revealed that he had juvenile Batten disease.
Speaking of her son Hudson, and her family’s partnership with BBDF, Amy Phillips says
“Hudson’s diagnosis has changed how we approach life. Almost immediately we realized that we had a choice to make. We could either allow ourselves to wither away in despair or we could cherish every moment and truly live life to the fullest with Hudson. Partnering with BBDF has given us a chance to seek out the greatest opportunities available for helping Hudson and every other child suffering from juvenile Batten disease. ”
This past year the Phillips family reached out to the National Hockey League, Make a Wish Foundation and Hudson’s elementary school finding open arms and support from each. A special highlight, Hudson was able to take a once in a lifetime trip to Hawaii with his family through Make a Wish Foundation where he was able to experience one of the world’s most beautiful environments surrounded by those that love him most.
Although the Phillips family is grateful for Hudson’s mental and physical strength and continuous progression, without a treatment or cure his near future is one of regression and deterioration. Donations to the Hugs for Hudson Fund at Beyond Batten Disease Foundation will go directly to the critical research that is needed to save the dreams and lives of all the children suffering from this devastating disease. BBDF President and CEO Mary Beth Kiser expressed the foundation’s gratitude and enthusiasm saying “we are so happy to have the Phillips family joining our efforts. Strategy paired with strength in numbers is the quickest way to find the most effective treatments, and a cure for this disease.”
With your help we can make the impossible, possible.
About Beyond Batten Disease Foundation:
Beyond Batten Disease Foundation (BBDF) is the world’s largest organization dedicated to funding research for a treatment or cure for juvenile Batten disease. Batten disease is a rare, inherited pediatric neurological disorder, which begins with vision loss and seizures, followed by cognitive and motor impairment, and ultimately death by the late teens or 20s. Since its inception in 2008, BBDF has raised over $15.5 million for research through donations, co-funding, leveraging and partnerships. BBDF funded research has led to the discovery of a treatment for juvenile Batten disease and the foundation has embarked on a 24-month, $6 million dollar plan to validate the findings and present a package to the FDA for clinical trial approval. For more information, visit www.beyondbatten.org.