A Message From Marianne Clancy, Cure HHT Executive Director:
As you have read in the fall edition of our newsletter, our foundation has invested in the creation of a new “Therapeutic Development Arm” to help us more directly collaborate with the medical and scientific community to fast-track life-changing breakthroughs in HHT.
I am writing to you now to share the tremendously exciting news that Dr. Murali Chakinala will be joining Cure HHT in the role of Senior Clinical Research Advisor. In this role, Dr. Chakinala will be responsible for leading our strategy for engaging with industry to grow the clinical research and scientific opportunities for Cure HHT. He will also play a pivotal role in collaborating with our CHRN roadmap teams to prioritize and help operationalize the most impactful projects.
To call this an exciting day for the HHT community is an understatement. Dr. Chakinala currently serves as the Director of the HHT Center of Excellence at Washington University in Saint Louis, where he is a professor in the division of Pulmonary and Critical Care Medicine. Beyond that, I consider Murali not only a friend – but one of our foundation’s most trusted advisors and clinical leaders. Dr. Chakinala has been intimately involved with our foundation and the treatment of HHT for nearly 20 years. He has made a true impact on our community not only through the patients he treats, but through his passion, knowledge, and leadership at large. He has played a critical role in helping to advance how we care for this disease, and is the absolute perfect person to lead our efforts to advance, prioritize and scale HHT research.
“Over the years, Cure HHT has established itself as a true partner in supporting advancements in medicine and science. I am glad to lend my support in helping to cultivate meaningful relationships with industry partners and academic researchers and institutions to advance research in this disease. But ultimately, the goal is to create impact for patients. HHT has long been an under-focused and under-resourced disease, and we owe it to the thousands of families who suffer from this disease to help correct that. I’m optimistic that the work of the new Therapeutics Development Arm will lead to real impact.” –Murali Chakinala, MD
In addition, I am pleased to announce that Dr. Scott Olitsky, Cure HHT’s chief medical officer, will also be transitioning into a new role as part of our Therapeutic Development Arm build out. Scott will now serve as our Global Center of Excellence Outreach Director, where he will be responsible for continuing to effectively grow our CoE program globally, engage with interested and talented clinicians to expand access to HHT care, and increase education and medical practice in accordance with our International Guidelines. Dr. Olitsky will be providing guidance to patients and families around the world to ensure they are receiving appropriate screening and referral for care.
Our patient community knows Scott well – as since his retirement as a pediatric ophthalmologist, he has selflessly dedicated his time and knowledge to helping educate both patients and providers alike.
“I am excited to help Cure HHT expand care options both in North America and around the world. During my clinical career, I had the privilege of traveling to many countries to develop programs to increase the scope of medical care and develop clinical programs. I look forward to using these same strategies to expand the knowledge and care of HHT globally and help patients receive the best care possible.” – Scott Olitsky, MD, MBA
In many ways, our foundation has been building for moments like this since our founding. Over the years, we’ve made tremendous progress in increasing awareness, expanding access to care, developing resources to help patients and physicians, and providing grants for promising research.
But today, several factors are converging to make this the opportune time to invest more heavily in proactively playing a role in driving scientific and medical breakthroughs. On one hand, our understanding of the underlying pathology of this disease has advanced rapidly in recent years – allowing for giant steps to be made in both basic science and clinical research. Externally, the recent explosion of the biotech space and incentives created by the government to increase focus on rare disease research means real breakthroughs are possible… but we must roll up our sleeves, get to work, and ensure our foundation is equipped with the knowledge, talent and skills required to bring breakthroughs to light.
At Cure HHT, we are committed to keeping us #OntheCuttingEdge of science. A future exists where therapies, not surgeries, manage the chronic aspects of this disease… and true, life-changing momentum is being gained in the realm of gene therapies. With moves like these, we are working to bring that future forward as fast as possible.