Some of us live in areas where there is no active chapter. I am grateful for a national presence, and presume it takes money to maintain an organizational structure. If you are asking for better accounting for funds, or for a different direction in spending, then let's hear about it specifically. But you have made several posts that have called us to action without specifics. I appreciate the motivational shout-out, and I in fact do more (calling my Rep., writing my Senator) after reading one of your posts. I appreciate the democratic "call to arms" but I'm not feeling the enlistment vibe because the specifics of the campaign are missing.

However, I will continue to step it up whenever you shout out, even though I realize I may be guilty of doing that of which you might disapprove. ;-)

Jackie

I got a whole bunch of different issues from Eric and everyone's posts. But, I have to say, that...quite honestly when I went to Washington DC for the HR678 stuff... I was more than miffed that I was literally scraping together money I didn't have-- but happy to do so... until I showed up at the hotel all the HD people were staying at.

I spent hours doing flight comparisons, hotel comparisons...traveling to BWI airport was cheaper. Super. Staying outside the city cheaper. Super. Then I get there and have a ride from hell from the airport in Baltimore to the low-rent hole of a hotel I got in Alexandria (Yes, basically I flew in North of DC stayed as far possible SOUTH...GRR. I arrived at the hotel, the smoke detector battery was dead. every 5 min. BEEP!! Then, after unpacking and laying down, the idiot who came to change the battery slips and yanks the whole smoke detector and half the ceiling down. Had to RE-Pack and change rooms.

Then, I get to the Washington Court Hotel the next morning....

I was pissy!!!

I also wonder about Docs, Board members and workers not having a relation to HD. In ways- I am sure it makes sense. Can't live and work HD...But in other ways...it doesn't. I think that an employee that say, is at risk, or whatever, will give 110% to the job..would probably point out things like "Hey, we can save XX $ by staying at a Holiday in Express... not to shabby"

So that's the only beef I have so far....

~ Laura Q.

I don't know what every chapter needs. What I do know is every chapter needs something. A lot of what is needed are things that don't don't even cost a lot of money. Sometimes no money. Can you get a step by step guide to applying for social services in your state? Or even phone numbers and offices there? Can you help compile that? Maybe you know a lawyer in your family, church or neighborhood that can address state specific guardianship issue in your state.. or you want to test but are told you should prepare for positive results. Maybe a few names of HD friendly lawyers would be handy... and actually help that process. Maybe you would like to see just one or two purely social events with HD families, where there is no agenda at all. Maybe a teen initiative where teens can get empowered and have an HD day at their school.. with a packet of material to have one. Crazy hat day for HD or something.

The problem is this... there are supposed to be 30,000 affected families right now. There are supposed to be 150,000 to 250,000 at risk people. And all these people have friends and co-workers who care about them. And we feel isolated. And we have this need or that need... and all this talent we have is where? Where the heck is everyone? Seriously? Some of the chapters have 5-7 maybe dozen go getters and they do the staples.. which is raises money for CoE's, get out the news letter, and maybe a state conference. That is all they can do alone. Each of those ten people would LOVE to have a committee of ten people to do anything at all! You will make friends... it's just a natural extension. The words Huntington's Disease has to pass your lips in your own families. They get used to it. And common issues of chapters... beyond how to get more money in will rise to the top. It's also a lot easier to help raise money if you have a personal vested interest. You won't mind doing a little of that too. And more people will have a say... your opinion will be of more value.

I was thinking how the natl board has a strategist planning event going on right now... and if we were already doing stuff how easy that job would be already. All they would be doing is choosing from the chapters what is working and why... and making those things a priority. Then it would be a bottom up organization, where all natl has to is facilitate us in our concerns. Right now the chapters facilitate natl.

Think about this... just a few hundred people nation wide have damn near passed an act of congress. AN ACT OF CONGRESS! That is power! Can't we get a list of social services? Or support teens to get excited and be important themselves? If you have HD in your family... don't you want a little power over HD... a reason to talk about at home? Once you say HD sucks here... and someone else agrees with you... is that all ya want and need? And do you think that hiding HD in plain site in your family is the best thing really? Are ten people who suppressed and repressed watching cousin Jane struggle with HD, but we don't talk about it, really the best thing?

You guys are the talent. You guys know HD from every single angle. Why can't we take the leap and use it and take over the issues either for ourselves or for the next guy?

If just one of you contact your chapter president.. or even one from a neighboring state... and ask to help and it works out.. will ya report back? Someone who never considered doing at all before today. Just try.. or even retry if it's been ten years since you tried. See if ya don't get something out of it. It won't be like being re-born. But it can be positive. They won't saddle you with a brand new fundraiser to do. They may ask you to do something simple.. stuff gift bags or something. You may want to follow those bags and see what's shakin' with them... maybe someone in your family will want to go too. Some of us just have to be the first snowflakes of the snowball. And we need our go getters to keep going... and support them so they don't burn out.

Just try it.

I can say that I will be pretty disappointed if all the money we have raised goes to a study like creatine or some other thing that isn't going to work. I've taken creatine for years while for lifting weights and here I am at 30 and symptomatic. Creatine isn't going to do anything. I would much rather see that money go to a family going through some emergency, or to some professional TV ads that can get the word out. We see millions of commercials for ALS and Alzheimer's and Parkinsons disease. We are a culture that depends on TV and internet and the best way we can spread that word is to take advantage of these media sources. Its kind of sad that the only way to get any kind of information on HD is to google it and search through tons of links that don't really matter. We should be trying to get the word out in a much more proactive way. Half the info on the web is basically useless anyways.

These are some of my thoughts. Thanks for reading.

I don't know what every chapter needs. What I do know is every chapter needs something. A lot of what is needed are things that don't don't even cost a lot of money. Sometimes no money. Can you get a step by step guide to applying for social services in your state? Or even phone numbers and offices there? Can you help compile that? Maybe you know a lawyer in your family, church or neighborhood that can address state specific guardianship issue in your state.. or you want to test but are told you should prepare for positive results. Maybe a few names of HD friendly lawyers would be handy... and actually help that process. Maybe you would like to see just one or two purely social events with HD families, where there is no agenda at all. Maybe a teen initiative where teens can get empowered and have an HD day at their school.. with a packet of material to have one. Crazy hat day for HD or something.

The problem is this... there are supposed to be 30,000 affected families right now. There are supposed to be 150,000 to 250,000 at risk people. And all these people have friends and co-workers who care about them. And we feel isolated. And we have this need or that need... and all this talent we have is where? Where the heck is everyone? Seriously? Some of the chapters have 5-7 maybe dozen go getters and they do the staples.. which is raises money for CoE's, get out the news letter, and maybe a state conference. That is all they can do alone. Each of those ten people would LOVE to have a committee of ten people to do anything at all! You will make friends... it's just a natural extension. The words Huntington's Disease has to pass your lips in your own families. They get used to it. And common issues of chapters... beyond how to get more money in will rise to the top. It's also a lot easier to help raise money if you have a personal vested interest. You won't mind doing a little of that too. And more people will have a say... your opinion will be of more value.

I was thinking how the natl board has a strategist planning event going on right now... and if we were already doing stuff how easy that job would be already. All they would be doing is choosing from the chapters what is working and why... and making those things a priority. Then it would be a bottom up organization, where all natl has to is facilitate us in our concerns. Right now the chapters facilitate natl.

Think about this... just a few hundred people nation wide have damn near passed an act of congress. AN ACT OF CONGRESS! That is power! Can't we get a list of social services? Or support teens to get excited and be important themselves? If you have HD in your family... don't you want a little power over HD... a reason to talk about at home? Once you say HD sucks here... and someone else agrees with you... is that all ya want and need? And do you think that hiding HD in plain site in your family is the best thing really? Are ten people who suppressed and repressed watching cousin Jane struggle with HD, but we don't talk about it, really the best thing?

You guys are the talent. You guys know HD from every single angle. Why can't we take the leap and use it and take over the issues either for ourselves or for the next guy?

If just one of you contact your chapter president.. or even one from a neighboring state... and ask to help and it works out.. will ya report back? Someone who never considered doing at all before today. Just try.. or even retry if it's been ten years since you tried. See if ya don't get something out of it. It won't be like being re-born. But it can be positive. They won't saddle you with a brand new fundraiser to do. They may ask you to do something simple.. stuff gift bags or something. You may want to follow those bags and see what's shakin' with them... maybe someone in your family will want to go too. Some of us just have to be the first snowflakes of the snowball. And we need our go getters to keep going... and support them so they don't burn out.

Just try it.

PS.. if you are from Indiana or Kentucky.... if you want to be involved.. let me know. There is something to do and places to be if you want a foot in the door. These are your Indiana people... just like you and me.

[www.youtube.com]



Edited 1 time(s). Last edit at 04/17/2010 11:04AM by Eric.

I will call my local chapter and see what they need and how I can help.

Hopefully Eric won't mind, but I'm going to feed off of his thread. The following was extracted from HDSA's Web site. These are the 2010 goals for HDSA. If you can help make this happen for us then please let me or HDSA know.

The vision for HDSA:

To be the premier U.S. national, voluntary health organization deciated to improving the lives of people with Huntington's Disease and their families.

The mission of HDSA:

* To promote and support research and medical efforts to eradicate Huntington's Disease.

* To assist people and families affected by Huntington's Diasese to cope with the problems presented by the disease.

* To educate the public and health professionals about Huntington's Disease.

The following is found at [www.hdsa.org]

Dear Friends,

When the calendar crossed into October, HDSA began its new fiscal year. More than a mere time marker, the new year means a new plan of work, with new programs, a new outlook and new opportunities for the Society to do an even better job of providing Help for Today, Hope for Tomorrow to our families throughout the country.

Before we developed our program of work for this new year, we spent a lot of time reviewing the programs already in place and listening to you - our constituents - to help determine what we do well, what can be improved and what unanswered needs we could provide solutions for this year.

As a result, we have a new plan for 2009-2010 that focuses on specific goals to strengthen our Society's reach, resources and impact. Some of these goals may look familiar; others are brand new initiatives for HDSA; but all of them are vital to strengthening our ability to fight HD.

It is my pleasure to present to you the goals for each of the nine business areas of our Society for the 2009-2010 fiscal year. Each goal, or target, helps move forward our work to have the strongest impact on our mission (programs services, advocacy and research), deepen our resources and reach (communication, revenue generation (national and field) and governance) and streamline our systems (financial management, operations and human resources.) Together, these 54 targets will move us forward in our continued efforts to improve the lives of people with HD and their families.

Regularly during this year, we will provide updates on how we're doing on this program of work. Consistent with our renewed commitment to communication and collaboration we want you to follow our progress, understand our challenges and most importantly, we invite you to tell us what you think. Because we cannot do it alone . Caring for those with HD, supporting new generations affected by the disease and unraveling the mysteries of huntingtin so we can treat and cure HD requires all of us, working together.

Thank you for all you continue to do in the fight against HD, and I look forward to hearing from you.

Talk soon,
Louise Vetter

2009-2010 Program of Work Goals

MISSION

Program Services: To improve the quality of life for people with HD.

? Improve access to HD resources through the creation of a central Referral and Resource Guide.

? Update the HDSA publication library to increase access to up-to-date HD educational materials.

? Develop and implement educational curriculum segments and evaluation tools for field-based education events.

? Establish Best Practices for the HDSA Center of Excellence program.

? Host CME event for Movement Disorder Specialists to increase understanding of HD.

? Pilot "HD Connect" peer mentoring program.

? Launch "Caregivers' Corner" series of webinars.

? Lead development of new guidelines for genetic testing for HD.

? Create and implement clinical trial education program on national and chapter level.

? Develop Educational Programming for 25th Annual HDSA convention.

? Publish core educational publications - one issue of The Marker and two issues of Toward a Cure - to expand awareness of the mission services.


Research: To further effective treatment to ultimately find a cure for HD.

? Fund Coalition for the Cure for renewed multi-year period with emphasis on coalition-wide collaborative and advancement of discovery.

? Build utilization of [www.HDTrials.org], including clinical study/trial investigators and registrants.

Advocacy: To improve access to care for people with HD.

? Develop comprehensive public policy agenda for the organization with complementary position statements.

? Host national Advocacy Day on Capitol Hill.

? Secure at least 50 co-sponsors of HR678/The Huntington's Disease Parity Act of 2009.

? Build nationwide advocacy network of lead advocacy volunteers, one per chapter and/or affiliate.

? Increase e-advocates by 10%.

RESOURCES

Communications: To be the premier source of all HD-related information.

? Develop and implement an updated HDSA Graphics Standards Guide.

? Develop and implement integrated and comprehensive Communications Plan.

? Increase media coverage through proactive outreach, including promotion of quality of life/caregiver survey results and "Faces of HD" campaign.

? Redesign and expand Region/Chapter/Affiliate websites.

? Develop Digital Archive to showcase organizational history and further brand development.

? Increase leadership collaborations with other national/international HD groups.


Revenue Generation: To secure funding to enable our mission.

National

? Raise $1.2 million in Major Gifts.

? Raise $350,000 through Family Funds program.

? Secure $125,000 through Memorials and Tributes.

? Raise $400,000 through Individual gifts, including four Direct Mail campaigns.

? Secure $1 million in Corporate support, including charitable gifts and educational grants.

? Raise $75,000 in Foundations and Non-Corporate Grants.

? Raise $200,000 for the Woody & Marjorie Guthrie Research Fund at the 13th Annual Guthrie Awards Dinner.

? Generate $140,000 in donations through workplace giving campaigns.

? Identify three new planned gifts; recognize $325,000 in bequest donations.


Field

? Secure $100,000 in national corporate sponsorship for signature Team Hope Walk program; achieve $595K net for program nationwide.

? Generate $100,000 in individual support through new market expansion activities.

? Confirm 2 new affiliates and 1 new chapter.

? Support Volunteer Development by hosting at least three Webinars, planning Leadership Training Day at Convention and expanding utilization of Extranet.

? Implement DonorPerfect database among Field staff.

? Lead all HDSA regions, chapters and affiliates to successful accomplish their locally developed programs of work and budgets.


Governance: To ensure the Society functions in a responsible and effective manner.

? Conduct comprehensive audit of Board (skills and diversity.)

? Identify two new members for the National Board of Trustees.

? Develop comprehensive Board resource manual.

? Ensure all Committees meet at least twice in compliance with the bylaws.

? Host Board Retreat.

SYSTEMS

Financial Management: To provide efficient and effective fiscal management to the highest ethical standards.

? Prepare financial statements by the 25th of the month following month close.

? Complete audit by February 28th for Board approval.

? Develop Comprehensive General Accounting Manual, including Internal Controls Policy.


Operations: To conduct business in the most cost-effective and efficient manner.

? Reduce general operating expenses for 2010 by 3% cumulative.

? Implement full slate of Corporate Compliance policies.

? Institute 3rd party Whistleblower vendor.

? Begin upgrade of Society's IT hardware with new workstations and nationwide exchange server.

? Complete interactive reconciliation among all HDSA systems.


Human Resources: To attract and retain highly qualified staff.

? Revise Employee Handbook.

? Develop and implement comprehensive employee Performance Evaluation Program.

? Recognize staff with competitive salaries.

Steve, sorry, but i can't understand this at all. Are you able to summarize this into something understandable for me? If youre not able to, i understand, but if you can put it into a smaller simple statement, that would be cool

PS never mind, sorry steve, i'm sur3e others will understand it, and that's what counts



Edited 1 time(s). Last edit at 04/17/2010 04:01PM by Barb.

It's just a post listing the goals that HDSA has established for itself for the current year. I thought that some people who are "goal oriented" might like to see the challenges that HDSA set for itself last year for the 2010 year.

I'd be interested to hear what goals everyone would like to see HDSA set for itself for the year 2011 (since that is what we're working on in the strategy committee meetings that are underway).

Well i dont understand this whole thread. Maybe that means i should just leave the thread. Eric started out saying this thread was not just about hdsa, but about canada and uk, all countries. Then he said money that is given to hdsa has been abused, i need your guidance, should i point fingers. Now he's saying, hey everyone, let's help the hdsa, and your saying yes, here are their goals. I don't get the original post on this thread, and what and where this has to do with other countries, and whe4re this is le4ading. Am i in a mood? I hope im not getting in the way, but i dont get it. Never mind,, i'll leave this thread alone, too much on my mind



Edited 1 time(s). Last edit at 04/17/2010 04:09PM by Barb.

I sympathize totally with Eric and I understand the conflicted nature of his earlier posts on this thread. He can't say much more without potentially creating new problems for himself, but he needed to say something so that we understand the reason for his lobbying for more HD famlies to become involved with their chapters.

My take on Eric's posts is that he feels that it would be very likely that his situation would never have been a problem (or at least the resolution would have been much less confrontational) had more HD families been in positions of influence so that the interests of HD families can be represented as a priority (relative to fund raising). Eric knows that this is important for any HD organization so he's not limiting HIS lobbying efforts to just HDSA. I believe that in principle he is correct and that's what I expect to see happen soon.

However, my lobbying effort at the moment is focused on just HDSA. And yes, I'm totally self serving. :-)

BTW: Does speaking for Eric give me any "street cred", or is he about to tell me that I missed his point entirely and that I am totally clueless? Regardless, I've hijacked his thread - only because I too "need your guidance".



Edited 2 time(s). Last edit at 04/17/2010 05:19PM by SteveI.

Oooooh, ok. So you're saying that eric is saying that hd organizations seem to make making money a higher priority than taking care of hd families...now i get it. Geez, dumb dumb lol, thank you steve, i get it now

We definitely need a more proactive approach, and assistance, with HD.... we need to ask how can we help, what can we do... I totally agree with that. It should always be about that. i remember back in 2001, Jim Pollard met my sister Carolynn for the first time. He wrote a paper about it, which is right here on this site. What he did that day, and what he has done countless times, is what we all need. He helped, he made a difference, and it did not cost anything. I mean, emotionally, yes....but what he did and did for my whole family is what I want to be able to do for others. It is free! And it works! I love you Jim!!!! honestly, making the change from down, down, down is tough. There is so much to be unhappy about with this illness. But there is so much to do, and doing something puts things in the positive, makes it all worth while.

Just my thoughts. Love to you all.

Suzanne

I could be way of the mark...cause dont worry barb im a little confused too...lol...but there's a little something in me being stirred by this thread... so ill post what my thoughts are.

Im in AUstralia, and when i first started getting active about HD i felt like i was kinda hit on the head by our HD associations. I had an idea to get an aussie forum going...but was told "no people don't like to use the internet" and that they "didn't have the resources or the time". Im not that great at taking no for an answer, so i did it myself, with a girl i met here, and now (after a few years) they love it.

Then i had an idea to fundraise and wanted the money to go directly to rural families who have no access to the association...but was told "no i could only donate the money to the main funds of the association"...so again we started our own little association and gave the money directly to families in our rural area. (in that process i unfortunately "lost it" with the CEO at that time..who told me she was "too busy" to talk to me because she was "helping families")

After years of trying, i eventually got the HD association to take the money under the guidelines we raised it for and got them to agree to make it available directly to rural families (which these families are soooo grateful for). This took hours and hours of discussion and letters. But now they love it.

But all this has been time consuming and exhausting....and far from easy. I felt so angry by my early contacts with the Association. They had never offered me anything growing up, or my mum, other than the newlsetter...and here i was wanting to help and was basically told no to every suggestion i had. I had no idea what a HD association even did, i still have a limited idea...but there was something in me that kept thinking "they are supposed to be helping us!"

In their defense though...they have had CEOs that were inappropriate, they are under resourced, understaffed, have a management committee that has been on board for 30 years, they are old (no offense to older people lol) tiered, worn out...and who the hell was I to be stepping in saying "HELLOO can we do things a bit differently???"

Now we have a CEO in our state that is at least open to ideas,has a family connection to HD...and at our last fundraiser (and oh my god she actually got in her car and came along!!! that was a first!) ...anyway i asked her could we donate the money to youth project and she said YES!!! Woohoo that easy!!

I agree there are very limited families stepping up saying Ill take on that job...and when they do i think they get burnt in all the processes. HD families juggle huge loads..sometimes i think people just find it too hard. Or they dont want to make HD their life. I know thats the case in my family...and i can understand that.

Im absolutely amazed at your post Steve...if i was to post an Aussie version it would look like something from the stone age....lol...but we have much smaller numbers i guess. But we don't even have an Incorporated National body...only our states are incorporated. This is our national website [www.huntingtonsaustralia.asn.au]
We have a looooong way to go.

At the moment i do what i can with HD friends. We do the websites, fundraisers, I talk at events...i try support the associations as much as i can... They all like me now and are happy to ask me to do favors for them...lol...and a part of that i think is them getting to know me and realize that im not a monster out to destroy what they have created!...but we do need to ask questions, challenge... and we are here to support them to do the best job they can.

I don't see how they can do their job without the active involvement of the HD community.

Ok now ive written an essay!
Michelle



Edited 1 time(s). Last edit at 04/17/2010 07:45PM by Michelle.

Brent, I hate to see you disappointed in Creatine.. I know several people taking it and someone with a CAG that some people might consider almost Jhd level.. That guy's been taking it since he was a young teen and he's early 30's now and doing FABULOUS. Instead of lamenting your symptomatic now and feeling it's too early for you, maybe without the creatine you would have been symptomatic even earlier. Please don't be discouraged and continue taking it.

I DO VERY MUCH agree with you about the publicity. I'd like to see TV commercials and even a telephon! I think you had great ideas! Pat

Michelle, I am very impressed that you just kept on working with the association and finally got through to them to get them to help families more directly. Good for you!

You do a great job Michelle, pushing for more and wanting HD families to have the best support they can get.

I'm happy with things here in England. I think being a small country helps us in many respects. I've had no problems personally anyway with the HDA and what they do. They made a forum for us, they moderate it for us, when I suggested we form a youth group I received nothing but support for the idea, when a youth website was suggested they paid for me to come to HQ to discuss ideas for it, when I email the head of the HDA I get a reply straight away (even if she is on holiday, bless her). All in all they seem to be committed to helping HD families as best they can.

[www.hdyo.org]



Edited 1 time(s). Last edit at 04/18/2010 07:58AM by just1moreperson.

Steve/Eric
When I see HDSA People Goals such as follows, I have to wonder what and who in the world is really getting out there & actually helping Individuals & Families who are crying out for help right now today and every day! After 35 plus years of living as a care giver and watching family & friends die from this horrible disease I have to say, what is needed in all countries is lay & proffessional resources right in the field finding out what the real needs are, and adressing them! Get in there and get hands dirty but do it now. If research continues at the spead it is going & with the results it is getting now, Heaven help us handle the humoungus people issues coming wether they be individuals or families wanting to obtain treatment or a cure.

"Advocacy: To improve access to care for people with HD.

? Develop comprehensive public policy agenda for the organization with complementary position statements.

? Host national Advocacy Day on Capitol Hill.

? Secure at least 50 co-sponsors of HR678/The Huntington's Disease Parity Act of 2009.

? Build nationwide advocacy network of lead advocacy volunteers, one per chapter and/or affiliate.

? Increase e-advocates by 10%."

I personally think that HDSA taking the lead in HR678 is one of the most important things it has done to aid families. Most Phds do not get Social Security on the first try and no wonder, the criteria doesn't fit! Right now it requires a drop in IQ to below normal (when in fact IQ is preserved well into the disease) or disabling chorea (some people have disabling dystonia instead and other have almost no chorea but more cognitive impairment). People making the decision about HD don't seem to understand that HD is inevitably disabling; they think someone might have a mild case of it or be in remission. Just this month someone's son was denied because "He is receiving treatment for his disease." Another friend's son was denied even with clear test results showing disabling cognitive impairment on the grounds that he was only 30 and this disease strikes at midlife.

It makes much more sense to get the criteria changed than it does to hire lots of social workers to help with applications and appeals.

And the other thing I like about this effort is that it involved some staff salaries and consulting fees but made even more use of volunteer efforts. They listened to our complaints and they worked WITH us.



Edited 1 time(s). Last edit at 04/18/2010 01:17PM by Marsha.

I have to say that my family has been way fortunate, in getting social security the first time around. And it was years ago now, that they did it. we have been fortunate all along with getting them that, and getting them to Laurel Lakes, and the care they have received. The hardest part was the social services part... and that had been a battle until February of this year... i am hoping that is totally over, as far as at least my siblings go.... Social Services have been the terrible thorn, roadblock, whatever,throughout this whole history.

I would love to see families being helped individually, i would love to be able to do something too, to help in some way. We are in the early stages of what our potential can bring about, and i look forward to thinking outside of the box.

Hugs,

Suzanne