Featured Clinician Scientist: Dr. Sabrina Paganoni – Investigating Novel ALS Therapies

 

Today, we are pleased to feature ALS researcher Dr. Sabrina Paganoni from Massachusetts General Hospital and Spaulding Rehab Hospital. She is this year’s recipient of the Clinician Scientist Development Award in ALS Research given in partnership with the American Academy of Neurology (AAN). The award gives her the freedom to pursue multiple ALS clinical studies, including an exciting new trial testing inosine, and to continue to attend to people living with ALS in the clinic. Get to know this dedicated ALS researcher both in and out of the hospital.

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Care Connection – Easing Stress on ALS Families

Families living with ALS are faced with a whole host of everyday challenges that can become a burden over time. The ALS Association created the Care Connection program to provide support to meet families’ needs to ultimately alleviate stress. Learn more about this extraordinary program and all the help it delivers.

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Featured Scientist: Dr. Nicholas Olney – Exploring new techniques for early detection

Today, we are happy to feature Dr. Nicholas Olney, this year’s recipient of the prestigious Clinical Research Training Fellowship in ALS Research Award given in partnership with the American Academy of Neurology (AAN). Dr. Olney is currently working on an ALS biomarker project aimed at developing clinical markers of disease progression, a major unmet need in ALS, at the University of California at San Francisco (UCSF) School of Medicine under the mentorship of Drs. Howard Rosen, Cathy Lomen-Hoerth and Bruce Miller.

Receiving this award is particularly poignant for Dr. Olney. His father, Richard K. Olney, M.D., was an internationally respected neurologist and researcher, who founded the ALS Treatment and Research Center at the University of California, San Francisco (UCSF), an ALS Association Certified Center of Excellence and served on the Board of Directors for The ALS Association Golden West Chapter. Dr. Olney was himself diagnosed with ALS in 2004, the same disease he helped his patients fight for over 30 years, and lost his battle in 2012. That same year, The AAN and The Association launched the Clinician Scientist Development Award and named the award in his honor.

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Positive Results for Phase 2/3 Masitinib Clinical Trial Announced

Last week, AB Science announced that the Masitinib phase 2/3 clinical trial reached its primary endpoint of ALSFRS-R in people living with ALS. Currently, the company has applied for conditional marketing approval to the European Medicines Agency (EMA) in Europe and is sharing results with officials at the Federal Drug Administration (FDA) to decide next steps in the U.S. The ALS Association is encouraged by the limited results released by AB Science and looks forward to hearing more later this year. Here is a brief overview of the phase 2/3 Masitinib study.

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Care Services Educational Offerings Update – March 2017

In late-February 2017, The ALS Association announced the release of 11 new Living with ALS resource guides on our website, www.alsa.org. The guides were designed to inform and educate people about ALS in a comprehensive and easily understood format, addressing many of the common concerns and issues that face people living with ALS. They can be found in electronic format HERE.

We are also pleased to announce that several new educational resources are now available to view and download from our website, including: Families and ALS: A Guide for Talking with and Supporting Children and Youths and the Medical Information Packet and Key Medical Information Card.

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SpongeBob SquarePants Creator Stephen Hillenburg Announces He Has ALS

Many of us here at The ALS Association are enormous fans of SpongeBob SquarePants. It has brought joy to millions of children – and adults – for a long time. So we were saddened to learn that SpongeBob creator Stephen Hillenburg has ALS, as he said in a statement to Variety. Here’s his statement:

“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”

You can read the Variety article here.

Our thoughts are with Stephen and his family. We are glad that SpongeBob will go on and look forward to someday finding out the secret formula in Krusty Krab’s delicious Krabby Patties…

Profiles of Milton Safenowitz Postdoctoral Fellows: Dr. Sergey Stavisky

The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Sergey Stavisky from Stanford University

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