Who Am I?

Who Am I?

Print: Who Am I?

Who Am I?

My name is Jean Miller and I live in Florida.

How do I reach you?

You can email me at: hdcureit@yahoo.com. I receive hundreds of emails every day so please be patient if I don't respond to any personal message you might send me right away. It takes a lot of time to maintain all of this information and try to maintain some semi-balance of a "normal" life!

Am I an Expert?

No. I'm not a medical, legal or financial expert. Always consult a qualified expert before acting on anything you read on this or any other website!

Are your websites associated with any particular HD organization?

Although I work closely with some HDSA Chapters and HD Centers of Excellence in obtaining or sharing information, this site based on 100% my volunteer time!

Do you have Huntington's Disease?

No. My only child, Kelly Elizabeth Miller, was diagnosed with Juvenile Huntington's Disease at age 16. She died from complications of JHD on November 15, 1998, three months shy of her 31st birthday. Her father, who I divorced when Kelly was 5 years old, had HD. You can read more about our experiences here Jean & Kelly Miller Bio's

Why did you start webpages on Huntington's Disease Information?

Throughout the 15 years that Kelly had JHD I accumulated and shared a lot of information on Huntington's Disease with my "on line" family covering everything from A to Z, including the personal experience I had being the sole caregiver for Kelly. I also belong to about a dozen research, medical, caregiving and end of life resources receiving daily and weekly reports which I read then shared any information I felt might benefit those living with HD.

Over the years people kept telling me they wished I would put all this information on a website. Since I didn't have any experience building webpages, my first attempt was through the generosity of a gentlemen whose wife had HD. With him, we created the "HD Caregivers" website, which is no longer updated.

On November 15, 1999, one year after Kelly died, I took early retirement from Honeywell after a 40 year career. Shortly afterwards I discovered Tripod who makes building webpages easy and my first website, Our Final Journey which addresses end of life issues, was completed.

Is there hope?

Yes, there's a lot of HOPE! Clinical Studies & Research for Huntington's Disease is being done by hundreds of scientists around the world! Check out some of the Quick Connects on to read the latest reports on HD.

Can I suggest a link?

Please do! If you found something interesting it might be of interest to others please either email me curehd@iwon.com with the link.

How is this site funded?

All costs associated with building and maintaining this information is paid for by me, without any contributions. There are a few "HD angels" who have volunteered to help maintain webpages by periodically checking out links.

Donations

If you feel the information on these webpages have been of help to you, and you would like to make a contribution, please consider one of the following:

The Kelly E. Miller Juvenile Huntington's Disease Fund. Contact the HDSA at 1-800-345-4372 to see how you can contribute to this fund or mail a check for the Kelly E. Miller Juvenile HD Fund to:

Huntington's Disease Society of America

505 Eigth Avenue - Suite 902

New York, NY 10018

Phone: 212-242-1968

This fund is classified as a major contributor to the HDSA Centers of Excellence and HDSA's Care & Educational programs. If you'd prefer making an on-line donation, please click here: Memorial Gift and designate your donation to "The Kelly E. Miller JHD Fund".

My Other HD Involvements

I contribute about 30 hours per week to HD. In addition to my websites, I am the Patient Advocate for the HDSA Center of Excellence at USF and also facilitate our local HD Support Group.

Along with Dave & Sue Hodgson, I am one of the adult advisors to the HDSA National Youth Alliance (NYA). This is a DYNAMIC groups of young people, ages 9 through 29, living with Huntington's Disease in the United States.

Oh, there is also my Help CURE HD Greeting Cards which are free greeting e-cards with a message to Help CURE HD. These cards can be used for HD Fundraising or Awareness by using a card on a T-Shirt, creating a calendar, etc.

I am also the co-creator with Sue Hodgson of the free Creating Huntington's Disease Awareness Posters which are also free to use to raise awarness.