Barack Obama, President of the United States, has announced a new initiative called the Precision Medicine Initiative. What he was really talking about was making medicine relevant and appropriate for specific individuals with specific clinical needs and specific treatments through the use of cutting edge medical technology. Because of its partnership with Genetic Alliance and other advocacy organizations, Alstrom Syndrome International is a part of this initiative which was introduced in the recent ASI Newsletter. Sharon Terry, leader of the project, CENA –- was present at the White House event for the announcement yesterday, January 30, with dozens of other patients and advocates. In fact, a young woman, a survivor of and advocate for a rare liver cancer, introduced the President. This was a day of recognition for all of you who suffer from Alstrom Syndrome and for all those who suffer from rare conditions. The work will create a large national registry, of which ASI is a part. We have a jumpstart on everyone. The President and NIH are looking to our CENA coalition to lead the way.
Robin and I were actually in Washington to meet with Sharon Terry when we were advised that she would not be available – she was at the White House! We still met with the Genetic Alliance senior staff, and feel incredibly fortunate and thrilled that ASI is part of this project.
We expect our Alstrom Syndrome Registry to be available in March. Let’s all do our part!
After that exciting morning, we also met with several of the expert physicians who were part of the recent NIH Alstrom Syndrome Study at the NIH Clinical Center. We enjoyed knowing that we were walking in the footsteps of those of you who have participated in this study.
You will be happy to know that an amazing amount was learned for all of you that will advance Alstrom Syndrome research well into the future, and the staff remembers each and every one of you and send their best regards. There are aspects of the study that we definitely hope to pursue to add to our understanding of Alstrom Syndrome!
All in all an exciting time for all of us.