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Reflections from recent NTSAD event: November 10th at Genzyme 

November 22, 2010 
by Rob Lowrance 

Reflections from recent NTSAD event, November 10th Genzyme, Cambridge MA by Rob Lowrance, Director of Operations, Propel Careers

The National Tay-Sachs and Allied Disease Association (NTSAD http://www.ntsad.org/) held their "Building Our Future" event on November 10 at Genzyme Center. I attended the event with my colleague Lauren Celano and we were happy to support the organization and connect with colleagues, friends, and NTSAD members.

The evening included a silent auction to benefit NTSAD, updates on the organization and relevant research programs, as well as a personal reflection by a grandfather on the impact of having a grandchild with Tay-Sachs. NTSAD is an organization that is dedicated to advancing efforts to treat and cure Tay-Sachs, Canavan and related genetic diseases, as well as providing support for affected families and individuals. I've had the privilege of attending a number of NTSAD events, going back to 2004 when I worked at Genzyme, and I came away from this meeting energized. In the last five years there has been progress made in research that was once not thought possible. The lives of people who suffer from these genetic conditions, as well as those who love and care for them, are still extraordinarily difficult but there is more hope now for treatments that will slow, reverse and even cure the underlying disease processes. I spoke to a number of people who can remember meetings when the purpose was largely support among affected families and updates from researchers where the news was encouraging but the impact on treatment seemed remote.

Organizations like NTSAD are tireless in their pursuit of breakthroughs in the treatment and understanding of conditions that were once thought, in the not so distant past, to be untreatable and even beyond our understanding. I can attest to the impact that NTSAD has had on parents who thought they were alone, and that they would never speak to another parent with a child suffering with the same condition. The power of those relationships cannot be understated, and they have also forged relationships with companies like Genzyme in order to facilitate the development of research programs that have not typically garnered the attention of biopharmaceutical companies. Genzyme certainly is the pioneer in demonstrating that therapies for ultra-orphan diseases can be successfully developed and commercialized, but organizations like NTSAD have done just as much to bring attention and understanding for the conditions that they seeks cures for. It is not surprising that an increasing number of large and small bio-pharma companies are pursuing therapies for rare disease indications. To see more details about this area, see the following link: http://www.fiercebiotechresearch.com/special-reports/rare-diseases-all-rage-big-pharma. I find this encouraging and it makes being part of the life science industry rewarding.

If you know Propel Careers, you know that we are huge advocates of networking and making new connections. As you explore events that you will attend, consider attending benefits for NTSAD and similar organizations: you can support worthy causes and make new connections at the same time.

 

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