EDS and CTD New England/MA Support Group

Reindeer’s real superpowers could help us beat depression and cancer, So what if Rudolph can’t really fly? He and the herd have some truly amazing evolutionary adaptations that could inspire new treatments for human diseases. Alison George for New Scientist, December 2023, via Jon R

New method tags cells with location coordinates for single-cell studies, by Sarah C. P. Williams for the Broad Institute, December 2023

Using AI, MIT researchers identify a new class of antibiotic candidates, compounds that can kill methicillin-resistant Staphylococcus aureus (MRSA), a bacterium that causes deadly infections. Anne Trafton for the MIT News Newsletter, December 2023, via Jon R

Norris Lab’s Intern Program, The Hypermobile Ehlers-Danlos Intern Program (HIP) which is an 8-week summer internship with the Norris Lab at the Medical University of South Carolina. The purpose of the HIP program is to increase the critical mass of researchers studying hEDS and empower patients with hEDS/HSD to be a part of the change. By doing so, we envision the acceleration of new discoveries that will better help researchers and clinicians understand the causes of hEDS to guide therapeutic discoveries. Applications are open now! (Click the title for the website.) via Cortney Gensemer, PhD

Review highlights impact of uncertainty in hypermobile EDS, Marisa Wexler, MS for Ehlers Danlos News, November 2023, via Jon R.

On sex, gender, and the wilderness of the scientific process, Janet Rich-Edwards, ScD, MPH for Brigham, November 2023 via Jon R

The need for increased genetic diversity in cell line models and CRISPR experimental tools, Broad Institute, November 2023

Search algorithm reveals nearly 200 new kinds of CRISPR systems, Allessandra DICorato for MIT News, November 2023

Sickle cell CRISPR ‘cure’ is the start of a revolution in medicine, by Michael Le Page for New Scientist, November 2023

Sustained Benefit for Newly Approved Myasthenia Gravis Drug in Early Responders, Nancy A. Melville for Medscape, November 2023

Repairing nerve cells after injury and in chronic disease, the Salk Institute, November 2023, via Jane Y.

New Training Method Helps AI Generalize like People Do, “The insights also could help illuminate the secrets of how AI systems—and humans—learn.” Lauren Leffer for Scientific American, October 2023

Research team designs gel that repairs cartilage nonsurgically with electricity, Kim Krieger for the University of Connecticut in Medicalxpress, October 2023, via Jon R.

Family Doctors Provide Most Care for Several Chronic Diseases, by Gwendolyn Rak for Medscape, July 2023 

Studying phages far from home, Lillian Eden for MIT News, June 2023. Identifying the mechanisms that drive how something does or doesn’t work is extremely important. -Jon R.

MIT engineers develop a soft, printable, metal-free electrode, Jennifer Chu, MIT News Office, June 2023 

Cutting-Edge Nasal Tech Could Usher in a New Era of Medicine, Laura Tedesco for Medscape, June 2023 .

MIT researchers to lead a new center for continuous mRNA manufacturing, by Zach Winn for the MIT News Office, July 2023, via Jon R.

NAM Leadership Consortium Collaborates with Leading Health, Tech, Research, and Bioethics Organizations to Develop Health Care AI Code of Conduct: The National Academy of Medicine (NAM) is partnering with a group of leading health, bioethics, equity, tech, patient advocacy, and research organizations to develop an Artificial Intelligence Code of Conduct (AICC)  and describe the national architecture required to give rise to and support equitable and responsible use of AI in health, medical care, and health research. For questions about the initiative, contact: LeadershipConsortium@nas.edu

For media inquiries, contact:
Dana Korsen | Director, Media Relations, e-mail news@nas.edu Office of News and Public Information

Engineers design sutures that can deliver drugs or sense inflammation, Anne Trafton for MIT News, May 2023

Using AI, scientists find a drug that could combat drug-resistant infections, Anne Trafton for the MIT News Office, May 2023 via Jon R.

Studying consciousness without affecting it, A new study tests an alternative to external stimulation for measuring when subjects lose and regain responsiveness during sedation and anesthesia. by David Orenstein from the Picower Institute of Learning and Memory for MIT News, April 2023 via Jon R.

Clinical Outcome Assessments: Does one size fit all? This Webinar discusses the complexity of identifying appropriate clinical outcome assessments (COAs) for rare disease clinical trials, Provides an overview of the Rare Disease Clinical Outcome Assessment Consortium Highlight the synergy with RDCA-DAP and reviews how data aggregation provides opportunities to refine, select, and interpret COAs across rare diseases. Held by Critical Path Institute on April 27, 2023 via Jon R.

“A Beginner’s Guide to Evaluating Research,” a handbook for patients by the Dysautonomia Support Network, April 2023 via Jon R.

What are the Drivers of Chronic Infectious Disease? an important research grant awarded to UC San Diego.  “Pipeline participants will collect tissue samples from clinicians and researchers working with patients afflicted with infection-associated chronic diseases, specifically Lyme, COVID, ME/CFS  and Ehlers-Danlos syndrome, an group of inherited disorders that affect connective tissues, such as skin, joints and blood vessel walls, and can leave patients more vulnerable to chronic infections.” March 2023 via Michelle M. 

New Law the Beginning of the End of Animal Research? by Alicia Ault for Medscape, March 2023 via Jon R.

Advancing Primary Care with Underserved Communities: A Case Study of the Leonard A. Lauder Community Care Nurse Practitioner Program, by Antonia M. Villarruel and Julie Sochalski, National Academy of Medicine, February 2023 via Jon R.

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes, Colin M.E. Halverson, Heather L. Penwell, Clair A. Francomano. SSM-Qualitative Research in Health, published February 2023 via Shannon W.

What to Do When Patients Don’t Listen, Medscape, January 2023 via Jon R.

Towards Disability-Inclusive Climate Resilience: What researchers can do to close the disability climate change equity gap, Harvard Law School Project on Disability, January 2023 via Jon R.

How to Get Your Healthcare Organization to Listen to Your Ideas, Jennifer Nelson -61% of physician respondents said they don’t have input into key management decisions. It may even feel like physicians in the trenches have the least input into key decisions. Here is some advice to get upper management’s attention. Medscape, December 2022 via Jon R.

Building Equity in Biomedical Research: Intensive program kindles next-gen diversity in clinical, translational Sciences, Brenda Patoine, Harvard Medical School, December 2022 via Jon R.

Physicians Can’t Be Bystanders in ‘Silent Scourge’ of Medical Bullying, Aine Cryts for Medscape News re: an important research study involving medical school students in JAMA Open, August 2022,via Jon R.

It’s Time to Shame the Fat Shamers, by Yoni Freedhoff, MD for Medscape on April 2022

Some doctors are reluctant to care for patients with disabilities, study finds: Details of three focus groups offer disturbing details about the challenges individuals with disabilities face when seeking care. Health Affairs, January 2022 via Debbie M.

Broad researchers are showing how protein analysis is not just a scientific tool but could also help improve patient care by Allesandra DiCorato for the Broad Institute, Sept 2022 via Jon R.

Research: It’s All About Patients, from the Mayo Clinic: information on clinical research studies and what they entail. I found it to be a good guide on what they are and the several levels and interactions that take place throughout the process. September 2022 via Jon R.

Head to Head: Artificial intelligence model outperforms clinicians in diagnosing pediatric ear infections, Mike Kotsopoulos for Harvard Medical School-News and Research, August 2022 via Jon R.

Folate-Deficient Hypermobility Syndrome: A New Diagnosis, by Jacques Courseault, MD for the Fascia Institute and Treatment Center, August2022 via Kamryn H.

AlphaFold Protein Structure Database, AlphaFold DB provides open access over 200 million protein structure predictions to accelerate scientific research, August 2022 via Tom M.