Garrett the Grand – Batten Fighter was originally created to fund research and find a cure for Type 1 Batten Disease (CLN1). Through this adventure we have found the importance of wellness of the mind and body. We also found that many families have a very difficult time finding equipment and the time to focus on their own well being. Through this we have created a program which will offer families the opportunity to get out with their loved ones by offering running chairs and handicapped accessible bikes which will fit both children and adults. We are able to sponsor families to run in events to encourage accomplishments and to build stronger relationships with loved ones.
Email us to use the equipment and for further information firstname.lastname@example.org.
Other Goals Include:
Spread Rare Disease Awareness
Fund Researchers - Scientific conference
Promote wellness for families
Support the establishment of the first Standard of Care for Infantile Batten Disease.
Support nursing care at the annual BDSRA family conference
Rare Disease Science and Research Scholarship - Provide a $500 Scholarship to a 2019 BASD Senior who plans to pursue a 4 year degree in Biology, Chemistry, Biochemistry or a related science.
Accomplished 2017 & 2018 Goals
Garrett the Grand - Batten Fighter looks to spread awareness and knowledge through their rare and unique events.
The non-profit hosts fundraisers including golf spectaculars, runs, dinners and other fun activities. We connect through face to face, phone, email, facebook, instagram (Garrett the Grand - Batten Fighter) and our website.
As an organization, Garrett the Grand looks to connect families with Batten disease, rare disease and unaffected families. Together we support each other and educate the community about the importance of rare disease and the effects it has on families and the community.
Our organization is very active in the government. We visit and talk with state representatives, congressmen and senators about the importance of rare disease. We encourage our representatives to push for funding of rare disease. We teach our government officials about the cost and heartache caused by rare disease, and that it can be stopped! Our advocacy for rare disease is constant.
As we search for a cure for Batten Disease, we also promote newborn screenings. Early screening and detection will then lead to treatment before the disease takes hold of the child.
Support BDSRA nursing care for affected Batten children during the annual family conference
Garrett the Grand - Batten Fighter looks to support rare disease but specifically fund research for type 1. GTG - BF has partnered with Taylor's Tale and other family organizations to fund Dr. Steven Gray at the University of North Carolina, Gene Therapy Center. Dr. Gray and his team are the leading researchers for NCL type 1. The team has made great strides and reached new milestones. The progress they have made gives hope for future families. Watch this video made by Taylor's Tale for more details....https://youtu.be/RUE7qmNuhFs
Garrett the Grand has helped to fund Dr. Steven Gray at the University of North Carolina and our efforts have helped! He has now joined forces with Abeona Therapeutics to start a clinical trial in 2018 (upon FDA approval). The press release is posted under the Blog tab.
And don’t forget, not only is Garrett the Grand invested in Dr. Gray’s work but GTG – BF also works together with other Batten Disease non-profits such as Our Promise to Nicholas in hopes of bringing together important researchers. We help fund researchers as they come together for the Scientific Conference for CLN1 in Bethesda, MD