Dear TANGO2 Community and Board Members,
We’re excited to share that we will be donating $2.5 million to the TANGO2 Research Foundation to support the vital work of advancing research and making a difference in the lives of those impacted by TANGO2 Deficiency Disorder (TDD). Our plan is to distribute these funds to the foundation over the next 3-5 years to accelerate strategic initiatives and help support ongoing operations as we collectively work towards shared goals.
We are deeply committed to the success of the TANGO2 Research Foundation and it has been a profoundly rewarding experience to be part of this community and witness the progress made in such a short period of time. This demonstrates how a relatively small but dedicated group of families, researchers, clinicians, foundation staff and volunteers can come together and effect change that is measured in months, not decades. The B-vitamin story is nothing short of amazing and has had a significant impact on Ryan’s life – he’s generally healthy, happy and no longer experiences episodes of weakness and fatigue. We hear similar heartwarming stories from other families every week.
With that said, there is still much more to learn and crucial work that lies ahead. The underlying mechanism of the TANGO2 protein is still not fully understood. We need to focus on early diagnosis and detection as we now know early intervention is key to saving lives and improving outcomes for those living with TDD. For families, how can we ensure that our children thrive not only for the next one, five to ten years – but are healthy and vibrant for a lifetime with improved cognition, free of seizures and able to regain some lost physical function? This will require not only optimizing the B-vitamin treatment while actively exploring other therapeutics, but also careful study and observation of TDD patients over time through a prospective natural history study.
Together, we can and will reach these goals – but achieving them will take all of us. Our hope is that our gift, along with the critical fundraising efforts of the entire TANGO2 community, will enable the foundation and its partners to get started on key initiatives sooner rather than later and help bridge the gap to larger institutional funding (NIH, FDA and similar organizations) in the near future.
Sincerely,
Mike & Kasha Morris
East Haddam, CT
