Steve and I have been talking about what to do with the Lighthouse. There are a lot of other sites out there and I am wondering if it's time to shut down our research section. I won't be writing for HDSA for too much longer so if you want to hear from me about the research it will need to be on our own site. I have been an independent voice educating the community about research for a number of years now. We are not wedded to any particular approach but are interested in covering any advances that are published in a peer reviewed academic journal and all drugs headed for clinical trials. Steve and I accept no advertising dollars, no contributions from individuals or pharmaceutical companies, and no reimbursement for expenses attending research conferences. This website is funded solely through our household budget. It will take some work to get the Lighthouse reorganized and caught up with all the research I didn't cover while my mother was terminally ill and while I was settling her estate but Steve and I are happy to do it if you guys want us to!

marsha-

are you spending lots of cash ok the site? can we contribute toward cost?

also - my husband is a web developer and maybe i could convince him to see if we can update your forum software to add a captcha which would reduce spam..

Thank you but the site is not all that expensive. Isn't the captcha software the program where odd looking letters pop up and have to be typed in before access? I don't think it would be a good idea here because some people with HD have vision problems.

Marsha and Steve,

The lighthouse was the first place I found after finding out about Huntington's disease. I came here frightened and alone. What I found here, the research, the articles, the voices of those who were walking the walk, was so unique. I have found nothing like this site for down to earth information, understanding and support.
Marsha. your updates on drugs and treatments, both in the pipeline and those already being used to treat the symptoms have been both informative and easy to understand.
I have learned, from you, to weed out and discard the ineffective and to further explore the treatments that really have the potential to work. This must truly be a labor of love for both you and Steve...and believe me when I say the folks on here feel it and know it!
Whatever you need to do with the lighthouse, I know you will do the best you can. I value your wisdom, experience and all the effort you've put in over the years. There is no other place like this one.
A huge thank you and a hope for the future of the Lighthouse.

Carla

Marsha,

I value your take on everything going on and I'd hate to lose it. Maybe you could combine the Basic Research, Drugs in the Pipeline and Clinical Trials into one "What's The Latest in HD News?" section. You could link to stuff elsewhere (HD Buzz, for example) and add your comments.

I assume Steve could easily archive all the stuff that's already there and save it for posterity.

Will

Hell will freeze over before I link to HD Buzz.

I'm finisshing my law suit this wweek and will have time for the lighthouse after. I still think ofy self as a reader but less of a writer here. I think there is a cycle of people helping others on the web which ebbs and flows, but as people did not understand how lucky they were to have me, someone in late HD who can still type but not perfevtly. I reaaly apprecaite your web you guys. I also have so many probllemsI'm miles above my mother at the same stage because I play the piano. My neck also get botoxed evry couple of mnths cuz HD has worn out my neck

Dusty, we ARE lucky to have you and I pray for your health.

Much love,
Marsha

I also have a garden in gardens of time which nearly done. I started one in facebook in french , did it in both langauges, but the fb one I did not have enough friends, and the playdom is in english. I have larned don't use your phone to pay for games, you only get half the amount of gold and your games arre axed on the phone bill. I play s[pider evry day on FB anddd bought my own mahjong for when we don't gget on line..take care you too. Are you arguin about the toilet paper roll now that the being polite has worn , 2 wweks coming up
Dusty-

Steve and I never argue and seldom bicker. We are really, really, really happy. I am an extremely lucky woman.

Ross and I are at 39 this year, or 40 living together.

Hi, Marsha,
Just curious why you don't like HD Buzz . . . is there something I should know about and/or not feel confident in reading their articles? Thanks!

Michelle

Michelle, I was wondering the same thing. I actually never heard of HD Buzz before Will menioned it. I just checked it out and it seemed ok, but I'm wondering if I should be suspicious of it? It looks as if most of the writers are international...maybe that's why?

I like reading hdbuzz. I started going there when I realized that the lighthouse isnnt updated very much anymore.
it also seems to have more info then hdsa
I'm not sure why marsha dousnt like it. to me it seems like any info about HD is good info.
Laura

Because of my mother's illness and the need to settle her estate, I was not able to update the Lighthouse but I have been posting my articles on the HDSA site (have been for five years). Steve and I will be updating the Lighthouse ASAP and my work for HDSA will be ending up soon.

I'm not saying you shouldn't read HD Buzz, I am saying I will never link to them. I don't think I want to discuss this publicly.

I too wondered on this site a year ago. I really don't even remember how. I am amazed that this is not some hugh funded iniatitive. My whole family has been affected by huntington's as a child of a bipolar mother, now my sister is bipolar, my niece has tested positive, myself and then of course maybe my kids, along with my other brother and sisters and nephews and nieces. Pretty typical stuff for those on this web site. Thanks for all the good stuff Marsha and Steve. You're amazing for this. Thanks to all that have spoke so frank and knowledgable. I've learned so much and am such a better space. How do say thanks for that!!!

Marsha,

The editor of HD Buzz is Ed Wilde (I assume you know this anyway) he also happens to be my HD neuro at UCL queens square ....

From a purely personal perspective I cant fault him nor his informative website..

I find your comments very odd??

Lorraine

Let's respect Marsha's desire not to link or discuss the issue. Everyone has opinions and most differ in some way. Some things are desirable to some and not to others.

Although I just popped back in I want to say to Marsha, Steve and all of you, this site has given me so much support since my diagnosis. Many things the Dr's don't have time for have come straight from here. We all support each other and that is a blessing. Although faceless, many friends in this community.

Marsha I hope you keep going. The venue you guys offer is priceless. I too did a lot of searching for a good community. How I stumbled on here I don't know but I am thankful. I'm sure you are very busy. I would like to see it updated at your convenience but if you think using other external sites is better then so be it.

Thanks,
Mike

Marsha & Steve,

This site has given me so much over the last number of years in terms of education, friends, support and hope for my ex-husband and the future of my two daughters who are both at-risk. This community has given me so much that I would miss its presence in my life so much. I don't post often but I read everyday and thank all who are regular posters.

Marsha I have also appreciated very much your work in translating the research and letting us understand what is important and what is not. It has been very frustrating over the last twenty years since my mother-in-law was diagnosed that we are still so far away from a cure. I thank you for your efforts to keep us informed and let us know what is important. I don't know where I would be without Lighthouse.

Thank for your efforts and please don't stop,
Concerned Partner

Please stay!!! This is the only place I have for support!!
Melissa