WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Laurie

Hi Everyone,

I am from Massachusetts and have had this idea for the last several years...lately it has been often on my mind and heart...it may be the Lord's prodding for me to help others and I hope to beging researching this the upcoming year...does anyone have any thoughts or ideas on this?....God Bless You All...Laurie

 DIFFERENT KIND OF FUND RAISER

A HD HOME

As we all know there comes a point in many of our lives due to our work and family commitments that as much as we would like to we are not able to take care of our loved ones that are afflicted with HD at home. There are very few options out there other than nursing homes where we can place a family member. Unfortunately they are then placed within these facilities that house a large majority of patients outside of their age group and a lot of the facilities do not have the staffing or services to help them be the best they can be. Yes there are other places that can help them continue to the reach their potential but they are usually beyond our family income, insurance or medical assistance means. Think of a person in their mid 30’s or 40’s being surrounded with people in their seventies it seems to me that this is too big an age gap to relate to. While the staffing may be good many facilities do not understand the complexities or mental, physical, or psychological needs of HD patients and the families that try to support them.

Therefore, I am hoping to start a fundraiser to build a facility dedicated for the younger HD patient from thirty to fifty years of age. Perhaps this would also encourage others to start something for the even younger age group that are afflicted.

But first let me give you information about why I feel this is important. I am fifty years old and a fourth generation of HD (that is as far as I can trace it) My Mother was an only child an developed HD in her early 30’s, it was only after she was diagnosed that she found out her Dad had HD and his Mom, he passed away when he was in his early 60’s and had her when he was fifty two. She did not know this until quite some time after she was diagnosed and then found out it was his Mom that had it and someone before her, My Mom succumbed to HD when she was 52. She had four children of which I am the eldest and all of my siblings have HD, my two sisters are in the later stages and my baby brother is mid stage. I had been the legal guardian of my Mom and now am of my sister and brother. And for those of you that are care takers my heart goes out to you and your loved ones. All I can say is that when you are angry or frustrated remember the person they used to be and remember that God is with you always even when the heartache and burden seems to be too much.

Anyway what I am proposing is the “mother” of all fundraisers and I am not sure how it will all work out and need advice and help. While we all know that funds are necessary for research but what about the here and now. What I envision is group homes for our loved ones afflicted with HD in the earlier stages because there are too few of them. Imagine a facility with a common great room with a fireplace with comfortable seating and room for wheelchairs with a television, puzzle and game tables. A family dining atmosphere with a very large table for chairs as well as wheel chairs, an accessible kitchen for snacks, cooking or baking for the residents to use, a flower and vegetable garden for them to take care of, a deck to sit on and enjoy a sunset, a workroom / woodshop for those that enjoy it, a craft room where residents can create items to sell and feel a sense of worth; rabbits, cats and birds for them to nurture and enjoy. Or what about a handicap accessible swimming pool, or an accessible nature path that residents that can enjoy. How about a work out room to help with strengthening muscle tone and a small chapel to pray for strength and for family. A visiting room with comfortable seating for guests, a children’s play area where a parent could spend time enjoying their child, television with a cd player for family movie time or enjoying home videos, etc. There a re so many options and ideas I hope you will share

This is one of my visions for a fundraiser, picture it a center kitchen and great room, private sleeping quarters off each end of the home with comfy quilts, items from home, pictures, things that make it feel homey not sterile. Perhaps it could build as a log home style. We could also have recreation and strengthening rooms and the great outdoors to enjoy the peace that the “Lord” gave us and wants us to find. If anyone is interested in helping, has any special skills or contacts for this or has any ideas for fundraisers please contact me. Of course within this planning we would have to find a way to incorporate staffing and see what agencies would be able to work with us and what assistance we could hope to receive. Please post your comments to me at this site, I am listed as "campingwoman".

Thank you and may the Lord be with you…Laurie

21 months ago

Jennifer

I hope you guys don't mind a MA girl joining the CT group, but I can see the "Welcome to CT" sign from my front yard! I'd love to be a part of your efforts!

26 months ago

Melinda (Mindy)

Wow, Stephen that would be a great feature thanks for letting us kno!

26 months ago

Stephen

I've seen a lot of events being planned here - just to let y'all know we have an events calendar feature that we hope to get up and running by the end of the week...hopefully it will help organize the various HD events...

26 months ago

Melinda (Mindy)

Benefit Dinner May 31st, 5:30-9:30pm
if you'd like tickets held at the door for you please contact me ahead of time thanks so much.

28 months ago

Sue

Mindy and i were on TV for HD Awareness month. Check it out. Hopefully the link will work.http://www.wfsb.com/video/16190695/index.html

28 months ago

Melinda (Mindy)

Sue I gotta tell ya I love the group name! very clever! :)

29 months ago