Thank you for visiting my page! The mission of this year’s Fundraising Campaign for the 2018 Chicago Marathon is AWARENESS. As of today we have raised enough money to purchase and donate over 100 VERY NICE Tech T-shirts to Brian’s Hope with the expectation that enough people will wear them and raise awareness. Our goal is to match every shirt with a $10 donation that goes DIRECTLY to Brian’s Hope. The shirt has been paid for; your donation will go to advancing research into ALD and ensuring genetic screening for all newborns across our country. All you have to do is wear the shirt around town when you work out, run errands, travel, go to a 5 star restaurant, etc. Think Awareness
As I mentioned the shirts are great quality and they will go fast. We have both Men’s and Women’s Styles Available from Medium to Double XL- don’t forget to message your preference with your donation and to use #savetheboys when you wear your shirt on Social Media.
Brian's Hope's mission is to fulfill three goals: to promote awareness of the debilitating disease of adrenoleukodystrophy (ALD), ensure genetic screening for all newborns and support advances in research. Early intervention is critical in order to stop ALD from advancing. The genetic marker has been identified, and screening is available. By making this test part of the recommended universal screening panel for newborns, we can identify any child with the potential for developing ALD so he can get the treatment he needs to stay well. Funding dollars are critical. Adrenoleukodystrophy research happens through private support. Currently, Brian’s Hope is funding a study being conducted at the Kennedy Krieger Institute, a center of excellence for ALD, to pursue an exciting, multi-stage research project targeting ALD.
This year Massachusetts-based bluebird bio, a leader in the research and treatment of cancer and severe genetic diseases, just received FDA “Breakthrough Therapy” designation for their Lenti-D gene therapy for patients with cerebral adrenoleukodystrophy (CALD).
This designation will allow for expedited development and review of the treatment protocol, meaning it is well on its way to becoming a mainstream treatment option! We are thrilled at the progress bluebird has already made, and the positive results from the treatment study that led to this designation.