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Kennedy's Disease Association

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OUR MISSION

inform, support, educate,

fund research, and find a cure for Kennedy's Disease

As 2019 closes, please remember the KDA in your charitable giving. Our mission is to inform, support, educate, fund research and find a treatment/cure for Kennedy's Disease. We can't do this without you. The KDA is run entirely by volunteers, which means over 90% of the money you donate goes directly to doctors and researchers seeking a cure.

KDA News

Visit the new and improved KDA website!

A huge thanks to all who attended and participated in the 2019 KDA Conference!

It was a great time to see old friends, make new friends and connect with the many doctors and researchers seeking a treatment and cure. Our first conference in Orlando was also our highest attendance ever for a KDA conference, so you'll see us in sunny Florida again sometime in the future.

Research Updates (with links to the papers)

Identical Twins with KD: A case study of two identical twins with KD shows very different onset of the symptoms of Kennedy's Disease. One twin started showing signs at age 31 whereas the other not until he was 56. There were also several other differences in how the KD impacted their lives. Read more about it here: Monozygotic Twins Discordant for Kennedy Disease: A Case Report.

Molecular Mechanisms and Therapeutics for KD: In an attempt to develop new therapies for people with KD, a paper by Frederick J. Arnold and Diane E. Merry provides a comprehensive overview of the many ailments that people with KD encounter. Molecular Mechanisms and Therapeutics for SBMA/Kennedy’s Disease

Heat Shock Protein as a possible treatment: It is believed that the long CAG repeat length in the androgen receptor is a mechanism that causes the protein to fold incorrectly and thus get trapped in the cell nucleus. The ability of Hsp70 to facilitate degradation of misfolded proteins makes it an attractive therapeutic target in polyQ diseases, of which KD is one. Targeting Hsp70 facilitated protein quality control for treatment of polyglutamine diseases

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Mobility Aids

Many thanks to Jim Kissling, owner/operator of Autofarm Mobility, who filled an entire room with mobility aids for people to try out during the 2019 KDA conference.

Jim states that there should be no stigma with the use of mobility aids.

"No one feels weird because they use a spoon or a hammer. They are just the right tool for the job. Like a spoon or a hammer, a scooter or wheelchair is just a tool we use to live life."

ATP: The right professional for mobility needs

You wouldn't go to your primary care doctor to get your teeth cleaned as this is not what they are trained to do. You shouldn't go to them to help you with your mobility needs either.

Whatever your mobility needs might be, an ATP (Assistive Technology Professional) can help you find the right technology aid for your needs. Also, they can take care of navigating the complicated insurance forms that are often required.

If you don't have a personal recommendation, the best way to find an ATP in your location is to use the RESNA directory.

https://www.resna.org/member-directory/individual

Other resources available on the RESNA site include

State Assistive Technology Act Programs
Assistive Technology Financing Programs
Protection & Advocacy Programs (PAAT)
Position Papers and Provision Guides

https://www.resna.org/about/consumer-and-public-information

Do you have a message to share with us? Let me know it! jameson411@gmail.com

KDA Memorial Page

If you have a loved one with Kennedy's Disease who has passed away and would like to have them added to the KDA memorial page, let us know at Contact the KDA with the information and a picture.

Click here to see the KDA Memorial Page

Kennedy's Disease Association

P.O. Box 1105, Coarsegold, CA 93614-1105

(855) 532-7762 Outside U.S. (734) 288-5580

KDA - Donation

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Moving Forward Together:

2020 KDA/KD-UK Conference

When

Wednesday, October 14, 2020 at 10:00 AM EDT
-to-
Thursday, October 15, 2020 at 2:00 PM EDT

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Where

This is an online event.

Dear Lucas,

If you had planned to sign up for the 2020 KDA/KD-UK conference, please be advised that registration closes on Wednesday, 7 October.

The conference will run for four hours each day. Wednesday will feature patient-focused talks and Thursday will be devoted to research, although it will be a condensed version of the usual research updates at KDA conferences. The draft agenda is now available on the KDA website.

Please note that we are considering a separate online event for research updates in the February-March 2021 timeframe.

Donations Welcome:

In lieu of a registration fee, we are inviting registrants to make a donation in whatever amount they can afford. This has been a difficult year for us and your donations will help offset costs for this event and enable us to continue supporting research.

To join us for this special event, please click the Register Now button below.

And when entering your email address, keep in mind that this is the one we will use to invite you to the Zoom session.

Make a Donation

Register Now!

I can''t make it

We look forward to your participation and thank you for your support of the KDA and KD/UK.

Sincerely,

Conference Organizers

Kennedy''s Disease Association

conference@kennedysdisease.org

855-532-7762

Kennedy''s Disease Association, P.O. Box 1105, Coarsegold, CA 93614

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Moving Forward Together:

2020 KDA/KD-UK Conference

When

Wednesday, October 14, 2020 at 10:00 AM EDT
-to-
Thursday, October 15, 2020 at 2:00 PM EDT

Add to Calendar

Where

This is an online event.

Dear Lucas,

Please join us for the 2020 KDA/KD-UK Conference: Moving Forward Together, supporting both our organizations'' goals to find a cure for and improve the lives of those living with Kennedy''s Disease. This will be our first joint event and our first conference held entirely online.

The conference will run for four hours each day. Wednesday will be geared more toward patient concerns, while Thursday will be devoted to research. Click here to view the draft agenda.

For all KD Men: The Kennedy''s Disease Clinic at University College London is conducting a survey to find out which symptoms you feel deserve more research and focus. Whether you will be attending the conference or not, we invite all of you to complete the survey here. The results will be presented at the conference on 14 October.

For U.S./KDA Participants:

When registering you will have the opportunity to sign up for breakout sessions (men''s, spouses/partners, carriers) on the afternoon of Wednesday, 14 Oct.

Pay what you can:

In lieu of a registration fee, we invite you to make a donation in whatever amount you can afford. This has been a difficult year for charities, ours included. Your donation will help us continue research into Kennedy''s Disease and bring us that much coser to a cure.

KDA DONATE HERE KD-UK DONATE HERE

Registration closes on Wednesday 7 October, so click the button below to reserve your spot.

When entering your email address in the registration form, keep in mind that this is the one we will use to invite you to the Zoom session.

Get more information

Register Now!

I can''t make it

We look forward to your participation and thank you for your support of the KDA and KD/UK.

Sincerely,

Conference Organizers

Kennedy''s Disease Association

conference@kennedysdisease.org

855-532-7762

Kennedy''s Disease Association, P.O. Box 1105, Coarsegold, CA 93614

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The KDA''s Statement about Coronavirus

Dear KD Family,

In this time of the Coronavirus pandemic, we at the KDA would like to urge extra caution for those with Kennedy’s Disease. The Coronavirus can cause lower respiratory congestion, which is difficult for some people with KD to deal with, since we have trouble producing productive coughs. If you are someone with respiratory difficulties, or are age 60 or older, we would include you in the higher risk population.

Please adhere to the recommendations by the Center for Disease Control on ways to prevent exposure to the Coronavirus, as this is your best defense. The CDC tells us that: The virus is thought to spread mainly from person-to-person (within about 6 feet) through respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.

It is recommended that you avoid close contact with people and large gatherings. Also, wash your hands frequently and avoid touching your face. To see more in depth information, click on the link to see the information the CDC has provided to help prevent infection.

In the interest of learning from your experience, we ask that you or a care provider contact the KDA if you test positive for the Coronavirus. Continue to live your lives, but do so in a way that keeps you and your loved ones at minimal risk. We wish you health and freedom from fear.

Sincerely,

The Board of Directors of the KDA

web contact

phone 855-532-7762

The CDC has a wealth of information about the Coronavirus.

CDC Main website
Coronavirus Fact Sheet

KDA Conference Status for 2020

Normally this would be the time we we’d be announcing the upcoming KDA conference and we were just about to do just that when COVID-19 emerged as a health threat that quickly developed into a pandemic.

Under these circumstances we have put our plans for the conference on hold. We are hoping that within the next month or so we will have enough clarity on the situation that we can make a wise decision about how to move forward.

The tentative plan is to hold the conference in Orlando during late October or early November, following up on the success of last year’s conference. We are now also looking at several contingency plans, including possibly holding a virtual conference.

Stay tuned for further information and, above all, stay healthy!

Symptoms of Coronavirus infection include

fever, cough, shortness of breath.

If you experience any of these symptoms and have KD, we recommend you contact your healthcare provider.

Emergency symptoms can be persistent pain or pressure in the chest, new confusion or inability to arouse or bluish lips or face.

Anyone who experiences these symptoms should immediately seek medical attention

Exciting news about an amazing event the KDA board and volunteers are currently working on with the KDUK group.

We''ll provide in-depth details in the coming weeks. For now, we''ll let you know that it involves cars and epic journeys in which anyone can get involved.

Kennedy''s Disease Association | Website

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OUR MISSION

inform, support, educate,

fund research, and find a cure for Kennedy''s Disease

KDA News

From

The KDA

We at the Kennedy''s Disease Association would like to wish all of our members and supporters a happy 2021! Looking back at 2020, it is easy to say that it was an unusual year. However, in spite of a global pandemic and Covid-19, the KDA soldiered forward with your help and support. The following is a review of what happened with the KDA this year.

Annual Conference: KDA joins forces with KD-UK in order to host it''s first ever virtual conference and breaks a record with over 250 attendees! More below.
Fund Research: KDA commits at least $150,000 to fund research on finding a treatment or cure for Kennedy''s Disease. With the next newsletter, we''ll announce the winners of our yearly research grants.
New Website: KDA reveals its new website with a sleek design aimed at making is easier to find information and provide support.
Developing a Patient Registry: The KDA has joined forces with the National Institutes of Health to create a Kennedy''s Disease Registry to aid world-wide researcher efforts for finding a treatment or cure.
Support of Research: KDA helps NIH-supported research survey to examine impact of COVID-19 on rare diseases community.

Not bad for a small group of volunteers who, just like you, have been impacted by Kennedy''s Disease. We have committed to inform, support educate, fund research and find a cure for KD and we need your continued support! As we welcome in 2021, consider giving the KDA your time and money. Together, we can continue to fight the good fight!

Donate to the KDA

2020 Annual Conference

With more than double the participants from any other conference, this year''s virtual seminar and breakout rooms were a great success.

We would like to thank the many presenters who shared their expertise with the goal of improving the lives of all of us dealing with Kennedy''s Disease.

When asked what their favorite part of the conference was, these are some of the responses attendees provided:

"Can''t choose one, found it all very interesting!"
"I really appreciated both days, lots of information"
"Loved the breakout session and wish it would have lasted longer!"
"All equally great!"

We are pleased to present a few videos featuring some of the speakers.

Conference Intro and KD-101: https://youtu.be/SIn9iKmFjWM
Day One Conference Summary: https://youtu.be/m_jkxAgGB4g

Here is a link to the Q&A document which is a compilation of the questions for the presenters as the seminar progressed.

Do you have a message to share with us? Let me know it! jameson411@gmail.com

Kennedy''s Disease Association

P.O. Box 1105, Coarsegold, CA 93614-1105

(855) 532-7762 Outside U.S. (734) 288-5580

KDA - Donation

Visit our website

Kennedy''s Disease Association | P.O. Box 1105, Coarsegold, CA 93614

Unsubscribe @

Update Profile |

Sent by info@kennedysdisease.org

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Data Name	Data Type	Options
(Female) KD Carrier	Text Box
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	checklist	Email ListsChoose the box that best describes you
	checklist	(Female) KD Carrier
	checklist	(Male) with Kennedy�s Disease
	checklist	Doctor/Medical Researcher

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