Innovations in Care
Outside Organization Programs & Information
As part of our support to the neuromuscular disease community, MDA posts information provided by outside companies and organizations that are educational or research in nature.
The information, programs and resources listed below are not developed, sponsored, funded or endorsed by MDA. The companies and organizations posting below are responsible for all content and information provided. Any questions or queries, please email us at ResourceCenter@mdausa.org. Posting may not be for fundraising or commercial purposes.
Center for Rare Disease Webinar
For Rare Disease Day, the UPMC Children’s Hospital of Pittsburgh is offering a free webinar for patients and families. The webinar is titled “Clinical Trials: Why You Should Care, Why You Should Participate” and is presented by Jerry Vockley, MD, PhD. The webinar is on Friday, February 26, 2021 from noon to 1 PM EST. To Register for this event, follow this link. If you have any questions, please contact Deanna Steele at Deanna.email@example.com or (412) 692-7556.
Help ALS/IBM Research
Liberating Research, as part of a market research discussion, is conducting phone interviews and written diaries with people living with Inclusion Body Myositis (IBM) or Amyotrophic Lateral Sclerosis (ALS) and their partners/caregivers/loved ones to learn more about their experiences. For more information, please follow this link or contact the following: Emmanuel Konyani +442080048160 (UK)/firstname.lastname@example.org or Sharon Elliott (646) 701-0050 (US)/email@example.com.
Virtual Starkloff Career Academy
The job market is more competitive than ever! Let us help you become the most qualified candidate. Starting February 23rd, our FREE 20-session Virtual Starkloff Career Academy will train professionals with disabilities on how to:
- Talk about their disabilities as a point of strength
- Highlight past accomplishments in eye-catching resumés
- Network to leave a lasting impression
- Answer the most difficult interview questions
- Negotiate pay, benefits, and accommodations
Now in a virtual format, train with our Career Advisors and partner companies from anywhere in the United States!
Dates: February 23 - April 29
Time: Tuesdays and Thursdays from 9:30 a.m. to 12:30 p.m. Central
Location: Zoom - Attend wherever you have internet access!
Cost: This program is absolutely free.
Requirements: Applicants must possess at least 2 years of post-secondary education including technical training or 3 to 5 years of consecutive, competitive employment. Applicants will be asked to complete an intake interview prior to being enrolled in the course.
Register today and reserve your spot in our one-of-a-kind career advancement course.
REGISTER TODAY: Penn FTD Center Familial Conference
The Penn FTD Center will be hosting this virtual conference on Saturday, February 27, 2021 from 9AM-12PM. The conference recognizes the unique challenges and situations that arise from familial or genetic disease and is designed to recognize and address these topics. You will have the chance to hear from genetic counselors, neurologists, and social workers on the genetics of FTD and ALS—and give you the chance to ask your questions in real-time. The agenda can be found here. Please register by following this link. In the meantime, please reach out to Laynie Dratch (Laynie.Dratch@pennmedicine.upenn.edu; 267.357.0761) with any questions.
Physical Therapy Webinar Series, Hosted by CureSMA
Cure SMA is hosting a Physical Therapy Webinar Series, sponsored by Biogen and The Luke 18:1 Foundation, which will provide information regarding exercise at home. These 1-hour educational webinars will include presentations from licensed physical therapists who will discuss an array of home exercises available to adults and children with SMA. Upon registration, attendees will also be mailed a resistance band set (limit 1 per affected individual in a household, 3 maximum). This versatile item is useful to strengthen muscles through a variety of both passive and active movements.
This event is intended for U.S. audiences only. Please contact firstname.lastname@example.org with any questions.
Disclaimer: Medical or legal opinions expressed or shared should not be substituted or interpreted as personal medical or legal advice. Please consult your healthcare provider regarding any health-related concerns.
- Tuesday, March 2nd at 5:00pm EST / 4:00pm CST / 3:00pm MST / 2:00PM PST: Adult Discussion on Home Exercises with a Physical Therapist
- Tuesday, April 6th at 5:00pm EST / 4:00pm CST / 3:00pm MST / 2:00PM PST: Pediatric Discussion on Home Exercises with a Physical Therapist
PTC Therapeutics Online Events
PTC Therapeutics is a science-led, patient-centered biopharmaceutical company focused on discovering, developing and commercializing medicine for rare-disease patients. They offer free educational events throughout the year. The list of upcoming events, their descriptions, and RSVP information can be located on their Facebook page by following this link.
BIO is conducting a survey on the Impacts on COVID-Related Clinical Trial Alternations on Clinical Trial Participants.
This survey is being conducted by the Biotechnology Innovation Organization. We are hoping to hear from patients about how COVID-19 may have impacted or is currently impacting patients’ abilities to participate in clinical trials. Additionally, if trials have been altered, we are trying to better understand if the changes that have been implemented have reduced or added to the burden for patients participating in clinical trials. If you have any questions about this survey please contact Danielle Friend at email@example.com. We appreciate your participation! The survey results will be analyzed on a rolling bases beginning August 31, 2020. The questions outlined below apply only to experimental treatment trials, NOT natural history studies.
LAUNCH OF iMaGineMyMG
Background: For MG Awareness Month in partnership with patients we are excited to launch iMaGineMyMG. iMagineMyMG is a place for people living with and impacted by MG to listen, learn and connect with each other. Inspired and designed by people living with MG for people living with MG, iMaGineMyMG is a resource in learning more about MG. The site is filled with new ways to connect with others and share experiences, resources and information on life with MG. It includes opportunities to participate in monthly surveys, post videos and pictures and connect with others in the community. It also includes resources for individuals to talk with their doctors on improving their quality of life and the day to day experience of life with MG. We’ll be updating the site on a regular basis.
Exercise and CMT
The Charcot-Marie-Tooth Association in collaboration with Therapies for Inherited Neuropathies created a series of physical therapy centered videos to help CMT patients in the areas of flexibility, balance, strengthening, endurance and function.
No Charge Genetic Testing for Patients Suspected of Having SMA
The SMA Identified Program offers no charge genetic testing for patients suspected of having or clinically diagnosed with SMA. The link to the program is below:
Take on Thymidine Kinase 2 deficiency (TK2d)
Whether you're living with an MDS, have been diagnosed with TK2d or are a parent, caregiver, or healthcare professional (HCP) who wants to learn more about MDS and TK2d, visit www.tk2d.com for more information. We can all take on TK2d together.
Gene Therapy Patient Education
The American Society of Gene and Cell Therapy has a variety of educational resources available on their website. Visit https://www.asgct.org/education to learn more about the basics of gene therapy, the clinical trial process and the potential of gene therapy for specific diseases including SMA and MTM.