Hope For People With Ataxia MJD

07/28/2010 Update: Arts for Ataxia Picnic in September 2010

We recently heard from an undergraduate student studying neuroscience that there will be an Arts for Ataxia picnic organized by the John Hopkins Student Ataxia Ambassador Program in September 2010. If you are in the Maryland area, I suggest you attend as it sounds like a great program to spread awareness about ataxic conditions and diseases. You can find out more information on their website.

Conquer Fear, Take Action, Learn, Get Involved

Knowledge is very incomplete about Machado-Joseph Disease SCA3, and conclusions based on statistics don't apply to each individual case.

Rather than see yourself as one of many, you might want to look at your condition as idiosyncratic and keep doing everything you can to promote a healthy mind and body.

If you had a parent or sibling who became very disabled because of MJD, that doesn't mean that MJD will cause the same things to happen to you. The expression of this disease is often very different even among members of the same family.

Since 1998, great strides in research have been made in understanding Machado-Joseph Disease SCA3. This research would not have been possible without the generosity of the everyday people who have donated to Ataxia MJD Research Project, Inc. and other ataxia-related nonprofits. But much research is yet to be done.

Fund Raising

One of the greatest sources of hope for you might be to see yourself as an integral part of this funding effort.

We need people who are willing to send letters or give newsletters to their friends, relatives, doctors and neighbors. Remember you're not asking for yourself, but for a nonprofit that is trying to help thousands of people around the world. And, donors receive a tax deduction for all contributions. If you are willing to help, let us know and we'll send you all the materials you'll need.

Creative Ways to Raise Funds  

• Holiday Gifts: Consider giving a donation in honor of someone. We will send them a holiday acknowledgement card.
• Birthday or Anniversary Party: Instead of material gifts, guests bring donations to the party.
• Raffle off some of your crafts, woodwork or art at gatherings.
• Have a yard sale and donate the proceeds.
• Donate appreciated stock and avoid capital gains tax CONTACT US FIRST FOR DETAILS 

Political Activism

Please ask your elected officials and representatives to fund Machado-Joseph Disease (MJD) (SCA3) research via government grants and programs. Most of the academic funding for important neurological research comes from government organizations, particuarly the National Institute of Health.

Working together, we can help scientists put an end to MJD and similar conditions.