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Living with KD

Support

You Are Not Alone

Finding Support

Those who actually exhibit symptoms of Kennedy's Disease need support and understanding, as do those who love them. In our community, people living with Kennedy’s Disease have offered to help. Below you will find ways to connect with others living with Kennedy's Disease all over the world.

If you have unanswered questions or need support, please Contact the KDA.  

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 2nd Saturday of the month. For more information and to be sent a link to join these calls, please contact us and let us know by clicking here.

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, use our Contact Us Form to request a zoom link to the KD Carriers group meetings.

Below are two links that you will find helpful:

https://facebook.com/groups/1445085168876329 (Carrier group on Facebook, you will have to sign up)

https://rememberthegirls.org (Advocacy group and much information for x linked carriers.)

Partners of KD Support Group on Facebook

This group is specifically to support those who are in the position of being a wife/partner to someone with Kennedy's Disease. Friends and families are there but there are so many aspects of the disease that can be difficult to discuss with them without feeling like you might be judged. Some aspects are incredibly intimate and hard to talk about. This is a safe space to share your feelings, struggles and grief. This group is on Facebook, If you have any questions or need more information, please use our Contact Us form to let us know.

 

Care Partners Zoom Support Group

A KD caregiver is usually a member of the family…spouse, parent or child.  Each comes from and 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 carers, use the Contact Us Form  to ask questions, comment or to request a zoom link to the caregivers group zoom meetings.

MDA Guide for Caregivers

The MDA "Guide for Caregivers" takes up and covers the areas of Finding Care Giving Help and Daily Care for Individuals living with Neuromuscular Diseases. You can download the guide by clicking here.

KDA Facebook Page

The KDA is on Facebook. Check us out and follow us! Find our page by clicking here.

KDA Forum

You should never have to feel alone with our Support Network of friends who are ready and willing to help. Our 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 but you will need to register for the forum to ask or respond to questions. To Access the Forum. click here.

KDA Conferences

The KDA held their first annual annual conference in 2001 and has held conferences every year to bring men, woman and researchers together to share and learn about living with Kennedy's Disease. To see upcoming and past conference information, click here.

 

Support in Other Countries

Kennedy's Disease support groups have been formed in Australia, Great Britain, Canada, Japan and Russia. Information to connect with these groups is below.  

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:

 

Team Great Britain

Important Links:

Australia

Kennedy’s Disease Downunder

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, follow this link:  Service Canada Locator

Kennedy’s Support Group – Canada Facebook Group

Japan

Russia

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