Support

You Are Not Alone in Your Quest for a Treatment and Cure!

The Kennedy’s Disease Association (KDA) mission is to provide information, resources and support for those living with Kennedy’s Disease, including caregivers, spouses, significant others and families.

Support Groups

Men's KD Support Group Via Zoom

Our support system includes monthly Zoom support calls. Generally, the group calls are held via Zoom on the second Saturday of the month. For more information and to join these calls, please contact us.

Carrier Support Group Via Zoom

As a carrier you are  NOT “just a carrier”. KD carriers face many issues both emotional AND physical. KDA has a group that meets monthly via zoom where carriers can share their stories and support one another. Being part of this group has given many women a sense of community and hope. Please contact us to join the KD Carriers group meetings.

Partners of KD Support Group on Facebook

The Partners of KD Support Group specifically supports those who are a wife or partner of someone with Kennedy's Disease. Friends and families are part of this group, and there are many aspects of the disease that my be difficult to discuss without feeling judged. Some aspects are incredibly intimate and hard to talk about. This is a safe space to share your feelings, struggles and grief.

Care Partners Zoom Support Group

A KD caregiver is usually a member of the family - a spouse, parent or child. Each comes with a different perspective. The KDA has recently formed a Zoom group to bring these perspectives to light. We will listen to each other, share stories and perhaps offer some tips. Consider this as a respite opportunity. If you are interested in sharing your stories with other caregivers, or if you have any questions or comments, or would like to attend the Care Partners Zoom Support Group meetings, please contact us. 

Resources

Carrier Resources

Below are resources that you may find helpful:

• Carriers of KD Facebook Group is a friendly and welcoming group where women of all ages, who are carriers of the rare neurological disease Kennedy's Disease, can talk and share their feelings, questions and concerns, without the worry of any judgement against them.
• Remember the Girls is an organization strives for a world where females impacted by X-linked conditions have access to the support, resources, and care they need to manage their physical and mental health and build their families.
• The MDA Guide for Caregivers is a helpful resource for individuals and families looking for support. The Guide addresses topics including Finding Care Giving Help and Daily Care for Individuals living with Neuromuscular Diseases. Download the MDS Guide for Caregivers.

KDA Forum

You should never have to feel alone with our support network of friends who are ready and willing to help. The KDA Forum provides an opportunity to learn from others, ask questions, share information, and build relationships. You can access and view the forum material without registering, or register to ask or respond to questions. Access the KDA Forum.

KDA on Social Media

• Check us out and follow us KDA on Facebook.
• Conned with KDA on LinkedIn.

Support in Other Countries

Connect with Kennedy's Disease Support Groups in Australia, Great Britain, Canada, Japan and Russia

Great Britain: KD-UK

KD-UK was registered in March 2015 as a non-profit in the United Kingdom. We are based in Dorchester, Dorset, UK and are run by volunteers, friends and sufferers of Kennedy's Disease. We raise funds to help support vital KD research at University College in London. We also want to raise much needed awareness of this disease. Both of these two aims are being achieved and we are so proud of all the support we have had to date. 

Important Links:

• KD-UK Website
• KD-UK Facebook Page
• KD-UK Twitter Page

Team Great Britain

Important Links:

• Team Great Britain Facebook Page
• Great Britain Kennedy's Disease Forum (Page down to Great Britain section)

Australia

Kennedy’s Disease Downunder

• Australia's Facebook Group

Canada

Below are some services and associations available for our brothers and sisters to the north.

The Government of Canada offers a variety of services and financial benefits to assist people with disabilities and their families. Service Canada has compiled a list to help you find benefits that may be right for you. To find a Service Canada office near you, see Service Canada Locator.

• Kennedy’s Support Group – Canada Facebook Group

Japan

Japan SBMA Association

Russia

SMBA Russia Facebook Group