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As you probably already know, there is a general lack of information regarding the ataxias. In fact, you may be surprised to learn that there is in fact no database of individuals at all. However, without enough accurate information, physicians and researchers cannot move forward. This especially important given the rarity of the ataxias themselves *and* the fact that we are only in the very early stages of even understanding the disease.
As a result, we are populating a database of SCA 6 individuals which will help researchers in understanding the disease mechanisms as well as potential use in future drug trials. We are private individuals who have family members affected by SCA 6. We are not affiliated with any particular medical facility or insurance corporation. We receive no money for our time and efforts; and are doing this solely on a volunteer basis. In return for your data, we agree not release the information unless it used for medical research purposes.
Beyond your own information, of particular importance is making sure we find every possible SCA 6 person. Statistically, the ataxias themselves are rare; the numbers of SCA 6 individuals are even smaller. That's why we ask for your help in locating other individuals. We will send them an e-mail asking if they wish to volunteer their information. If they agree, we will populate the database; if they do not, no further contact will be made.
Please complete the form below, by doing a copy&paste (read how to below) in the body of an email message to (just click on her name) Heather Graham <[email protected]>. Finally, we thank you for your cooperation in this important and potentially life-changing project.
Sincerely,
The SCA 6 Research Project Team
This is what you'll need to copy&paste in the
email:
(To copy&paste: Click and keep pressed your mouse button just
before the "L" in "Last Name =" and drag down the mouse until it's
after the "=" in "Add'l Comment =" - all the text should now be
hilighted - press Ctrl-C to copy it - then go in the email message,
be sure to click in it's body part, and press Ctrl-V to paste back in
the text - complete it and send)
****************************
Last Name =
First Name =
State =
Zip =
Street Address =
City =
E-Mail =
Phone (with area code) =
Type of Ataxia (e.g. SCA6, SCA1, etc.) =
Family Members affected (Y/N/?) =
Any Children (signs or no signs) (Y/N) =
Contact Information for Children =
Other Family Members - Name, Relationship & contact information
=
Birthday (MM-DD-YY) =
Age of Earliest Signs =
Earliest Signs =
Current Mobility Affected (Y/N) =
Comments on Current Mobility =
Current Mobility Aides for short distances (e.g. 3 wheel walker,
wheelchair, cane, none, etc.) =
Current Mobility Aides for long distances (e.g. 3 wheel walker,
wheelchair, cane, none, etc.) =
Current Sight Affected? (Y/N) =
Comments on sight (double-vision, blurred, nystagmus, etc.) =
Aides for sight (e.g. glasses, glasses with prisms, magnifiers,
none,etc.) =
Hearing affected? (Y/N) =
Comments on Hearing =
Speech affected? (Y/N) =
Comments regarding speech =
Swallowing Affected? (Y/N) =
Comments regarding swallowing =
Fine hand movements affected? (Y/N) (ability to pick up small objects
precisely, write, etc.) =
Comments regarding hand movements (shaking, coordination, etc.) =
Memory affected? (Y/N) =
Short-term Memory Affected? (Y/N) =
Long Term Memory Affected? (Y/N) =
Comments regarding Memory =
Thought Process affected? (Y/N) =
Comments regarding Thought Process =
Add'l Comments on Current Signs =
Current Status (stable, steady decrease, rapid decrease, etc.) =
Current Medications (All) =
Current Ataxia Medications =
Comments on Current Ataxia Medications (what seems to helping or
hurting + how is it affecting you) =
Environmental Agents (Y/N) =
Environmental Agents (or concerns) =
Interest in answering add'l Q (Y/ N) =
Drug Trial Interest (Y/N) =
Other individuals we should contact. (E-mail address is best.
Otherwise phone) =
Add'l Comment =
************************
Don't forget to send the survey to Heather
Graham <[email protected]>