Resources

CHRONIC ILLNESS

Chronic Illness Awareness Coalition is a coalition of individuals dedicated to improving the quality of life of persons affected with chronic illness, conditions and disabilities. See: http://www.cicmich.org.

HealingWell.com is an online community that provides support and resources (articles, news, videos, message forums, chats) on a wide variety of diseases and health conditions. See: https://www.healingwell.com.

Lights in the Darkness is a virtual support group for passionate artists, musicians and authors who use creativity to help themselves or others heal. It is a place to share the connections between creativity (stories, music, art) and healing. See Facebook Group: Lights in the Darkness: Artists, Authors, Musicians Creating to Heal: https://www.facebook.com/groups/433332727132078/.

MedlinePlus is the National Institutes of Health’s website for patients and their families and friends and provides information about diseases, conditions, and wellness issues. For resources for coping with chronic illness, see: https://medlineplus.gov/copingwithchronicillness.html.

The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. See: https://themighty.com/.

MusiCares is the Recording Academy's charity and provides a safety net of critical assistance, resources and services for music people in times of need that cover a wide range of financial, medical, and personal emergencies. MusiCares also focuses the music industry's resources and attention on human service issues that directly impact the health and welfare of the music community. See: https://www.grammy.com/musicares.

Our Heart Speaks is a resource for individuals living with chronic medical conditions and new disabilities. The site provides an online library and community for individuals to share stories of rehabilitation and healing through personal narrative, poetry, photography, video, artwork and music. See: https://ourheartspeaks.org.

The Spoon Theory is Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. See: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon- theory/.

Suffering the Silence is a 501(c)3 organization dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding the life experience of people living with chronic illnesses and disability. See: http://www.sufferingthesilence.com.

Who Cares: Chronic Illness in America” is a resource list of websites related to chronic care, chronic illness, and disease and includes medical news stories, latest research on various diseases, and online communities. It is based on the topics covered by “Who Cares: Chronic Illness in America,” a PBS KQED Television program that aired November 11, 2001. See: https://www.pbs.org/inthebalance/archives/whocares/resources.html.

DERMATOMYOSITIS/MYOSITIS

Cure JM Foundation is a 501(c)(3) nonprofit organization focused on finding a cure and better treatments for the rare and life-threatening autoimmune disease Juvenile Myositis and improving the lives of families affected by JM. See: http://www.curejm.org.

Keep In Touch” physical support groups and chapters provide members the opportunity to get together with others in their geographic area and share concerns, friendship, and ideas. See: The Myositis Association (TMA), https://www.myositis.org/patient-support/support-groups/ or Cure JM Foundation, http://www.curejm.org/local-chapters/chapter_home.php.

The Myositis Association (TMA)’s mission is to increase support, awareness and funding for the myositis patient, caregiver and research community. The aim of TMA’s programs and services is to provide information, support, advocacy, and research for those concerned about myositis. See: https://www.myositis.org.

Virtual Support Groups. Many social media and social networking groups exist online specifically to support people who have myositis. Examples include Facebook groups, such as Myositis “Ramblers” Keep In Touch Group and Cure JM Foundation, and MYO-Connect (for members of TMA), which can provide support where no Keep in Touch groups exist, or for members who are physically unable to attend local meetings. See: https://www.myositis.org/patient-support/support-groups.