Guest Author: Dr. Pravin Khemani
Swedish Neuroscience Institute; NAF Medical and Research Advisory Board Member
Hi folks! Social distancing is not social disengagement, so please stay as connected with your near and dear ones as possible…safely of course. Recruit your children or your tech-savvy friends and family to show you how to use technology to stay connected. Or if you are a tech-whiz share your knowledge with others.
Please visit Coronavirus Precautions for Ataxia Patients to get information on how to stay healthy and keep others healthy. Follow CDC guidelines and stay in tune with what’s happening in your community through the Department of Health.
People who have chronic neurological disorders, including the Ataxias, are assumed to be at a higher risk of COVID-19, but the absolute risk is not known, therefore there is no reason for alarm and panic as long as you are following the health guidelines outlined by the CDC. People with respiratory compromise, high blood-pressure, diabetes, cardiovascular diseases, and other medical conditions that reduce immunity are the most commonly affected based on the scientific data available for review.
Use your time well while staying safe and healthy as we move closer to a cure for the Ataxias.
Dr. Pravin Khemani
Swedish Neuroscience Institute
NAF Medical and Research Advisory Board Member
In the meantime, here are some things that a person with Ataxia can get done while you are spending extra time at home.
Things to Do While You Practice Social Distancing By Staying at Home
Enroll in CoRDS or if you have already enrolled, return to the registry and update your information. CoRDS hosts the Ataxia patient registry that is vital for Ataxia researchers.
Review General Session presentations from previous Annual Ataxia Conferences.
If you have a specific type of SCA, educate yourself more about it at Gene Reviews.
If you have Hereditary Ataxia, create a family tree indicating those who were or are affected.
Become educated on the clinical trial process. As we move into more pharma therapy development we will need to recruit participants into trials. Check out NAF’s webinars on these topics.
Join the NAF Facebook page if you are not already a member.
Attend a virtual support group meeting. Check the NAF events calendar for the most up-to-date listing.
Join the National Ataxia Foundation, if you are not already a member. Membership is free!