Without a sense of caring, there can be no sense of community.
- Anthony D'Angelo
Patient Support
Supporting people affected by dystonia and their families is a major priority for the Dystonia Medical Research Foundation- patient support has been a part of the Foundation's mission since our founding over 30 years ago. Coping with dystonia can be life changing. The process of obtaining a diagnosis can be frightening, especially when the individual is experiencing a loss of mobility and possibly independence. It can be very stressful and isolating.
Peer support can help those affected by dystonia recover and thrive. By sharing knowledge and feelings, dystonia patients can learn from each other and take comfort in knowing that they are not facing an uncertain future alone. DMRF support groups can help alleviate feelings of depression and promote a healthy attitude and better physical outcomes. Research has long demonstrated the importance of support groups in helping to improve the lives of those living with disorders like dystonia. Establishing a network of peers who are working together to share coping strategies, lend a friendly ear during those particularly challenging days, and who share a desire to stay abreast of dystonia treatment and research news is so important.
The value of Support Groups
The key function of a DMRF support group is support and education. DMRF support groups empower patients, family members, and friends with information and offer a venue for discussing and validating their changing needs and feelings. Support groups provide members the opportunity to be and stay connected with others who can truly empathize with how dystonia changes lives. DMRF support groups are also a place for others to give back - to help those who are newly diagnosed or those who are having a particularly challenging time. DMRF support group members care about one another and as such create an important community.
Recent advances in technology and the growth of social networks have created more virtual outreach to others who are affected by dystonia and this is to be celebrated. However, there is no substitute for that person-to-person, human contact and the DMRF is committed to helping provide access to this for those who want more, -- those who want that personal touch that support groups provide. For more information on DMRF support groups, please contact Julie Mack at the Foundation: jmack@dystonia-foundation.org
Educational-Support Opportunities
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