I have just been though the wringer on a personal matter locally involving myself and a person locally who is an official representative of the HDSA. I filed a formal complaint, it was heard and the issue was resolved in my favor. I got exactly the resolution I asked for. Personally I can't complain.

My chapter board came through with flying colors... they have put their butts on the line for me... and I think they will actually pay for it. I would be more specific... but rather than spout off names and people and so forth... and create collateral damage from the onset... just take my word for it that my personal matter became a mess. I don't think anyone had ill intent. I think the system is just not right, nor is it prepared for everything that happened. There are systemic problems I feel.

I could take my personal "win" and go home. What it cost personally was pretty high. It has been very draining. My "win" though feels now pretty much secondary from what I feel I learned. And I have disappointments that now think could serve as teaching moments from the top all the way down. I feel that if there are true missions and not just mission statements... that everyone should be completely dedicated to those missions first and foremost... or simply not state them as missions if they are not. I don't think we should ever settle for anything that is second best. The goal should always be to attain the best... whether we can always have the best or not.

The question is if the best costs something in return... like some finger pointing... do ya do it?

I am quite tempted to say screw it...

I am also quite tempted to say screw it and call out everyone.

But really I just want people to just face some facts... and change them. We don't have the best... we have better than we did.. but not the best. Paying lip service to the best is bullshit.

I don't want to know whether a chapter walk raised $30,000 dollars. I want to know that $30,000 of many peoples hard work is dedicated to making HD families better off. Not $15,000 of it. Every cent should be toward the mission... and yes keeping the lights on at natl is part of that. Any waste is an insult to us. A bad CoE is an insult to us. A four star hotel for a meeting rather than three star is an insult to us. We should not only be asked to give money, and raise money... we should be empowered to know where it is... and say I don't want what it is being spent on. A chapter shouldn't have to second guess whether they are keeping everyone happy if everyone isn't the best for HD families.

I can do it... but if I do it alone I am just a malcontent. And what I need is people and not just the HDSA to change... I need us to change. This could apply in the UK or Canada or AU as well. We have to participate... and we have to be asked to.

Last.. our chapter president was dealt a crap hand... as was our board. Patti Day handled my issue and did so with HDSA mission at heart. I pushed her very hard and caused her a lot of angst. And for a while I was very unfair to her personally. I am sorry about that. I think our board had several issues and were guided away from the "family first" attitude that they would have otherwise had, and asked to consider things that shouldn't have been their problem. But all things being equal... they are, and they have been the improvement Indiana needed. If every chapter was this good everyone would be in better shape. At the moment there may be doubts about them from higher up... which is how they know.

Anyway.. I am all for patient evolution however there are sometimes moments in time time where people have to act ... this could be one if anyone else is interested. Is anyone?

I will do whatever I can to help. What exactly can I do? Please be specific!

Well, Yes I am willing to act Eric. I have asked on another list to PLEASE allow me to cut and paste problems from that list (removing any identifying markers) and send them on to Barb and now Louise. No takers... well, I take that back, one from Canada and we agreed to send our letters to each others ntl's.

Eric, people are afraid, and I don't really know why. You are still here right? Is this you? Can you prove it? Can you prove you are still alive? I'm not sure why people are afraid to speak up. They cannot come take away our homes, they cannot come prevent our Phd's from getting their meds, they cannot get me fired from my 12 hour a week job as a home health aide.

Also to keep so quiet about it, I'm not sure is the answer. I think when we have a problem with something we should say it outloud, LOUDLY.

Also I'm thinking if you feel you have been damaged personally Eric, maybe a statement should be made by a suit? Just a suggestion.

Tell me/us what to do Eric!

Eric,
I'm not very good at commenting on something I know little about. I'm not quite sure what you are asking of the forum members.
In general anyone who participates in ANY WAY in an organization in ANY Form has a responsbility to the unit or organization's ultimate goal (if the person is capable) and that includes just us measley forum posters but, in the end when all is said and done on an issue it IS up to the "president, CEO, or equivelent" to take responsibility for anyone residing under their reign.
"Wrongs are often only Righted by rattling the cage!"

Hmmm Eric,not to sure what you are asking?My interpretation sounds similar to our Members of Parliament (MP's) scandal in England last year.They were using tax payers money to claim elaborate personal expenses for their second homes.I take it someone was using charity money for something they shouldn't or to elaborate?I appreciate you carn't say to much.Well the people did protest over here and now big changes have happened to change the system.You want to start a petition on here Eric?

Eric,

Have you talked to Jimmy P about this particular situation? He seems to have his head screwed on right the vast majority of time.

Will

So glad to hear your personal issue was resolved eric. I'm wondering the same as others though, what is it you are asking us to act on? Sorry, just i dont understand from your post either. But yes, i will be glad to do anything i am able to do



Edited 1 time(s). Last edit at 04/15/2010 04:32PM by Barb.

Sorry I was cryptic. If I was going to ask one thing of anyone it is to participate locally. Not to complain or to "uprise" ... but to contribute. There is an opportunity right now to help make HDSA, HDA, HFC work better. The people here have it going on... they know problems and know what the next person is gonna need. If we don't participate and help guide these places.. they have no choice but to decide for us what is best. It keeps being left up to well intentioned people who are often times guessing what is wanted and needed. Seeing us and knowing us is much better than letters. We have to enter hoping to help the next guy...

If you want my general feeling or a broad stroke of what I am thinking in particular... I have two things I would love to see.

#1 is "families first". If that is considered top priority in every decision.. most decisions will be right decisions. No one from the chapter all the way up to the board will have to apologize for any move if that is a priority.

#2 is "families helping families". There are things only families seem to get. A paid social worker or doctor, no matter how good doesn't come home to HD everyday. They don't live at risk.. don't carry the gene. We do. Sometime we are our own solution. We need to be comfortable with each other. In person, and work to fix us ourselves. A place like this or facebook or firstgiving are only one piece of dealing with HD. If we are ever going to make HD smaller we have to be bigger.

Screaming from here isn't the answer. I don't want to do that. I don't want anyone to do that.. it doesn't work. I want people to help in their neighborhood... then pass on what works there to my neighborhood. The particular agenda will surface rather than be invented. The HDSA wants to improve. They are having strategic planning right now! When we work cooperatively under the same game plan, complaints turn into suggestions.

It doesn't matter what happened here... it was local. And a little distance from the events will help clear a little of my own passion over it. If I tried to explain it now it would come out with ten villains and me in the white hat... That can't be exactly true. Too bad cause that's always my favorite version of every story... .

I am very confused by your post. I'm not sure what you're trying to say, resolve or what the problem is in the first place.
I usually read your comments quite easily, but ya lost me on this one.

Maybe just a little more info?

Please Eric, Let us know what you are saying. Talk to Jim Pollard, that is one thing... he does have a ton of info, and certainly has made me more aware of things. But either way, you do have to elaborate on this. We do an HD walk every year in Massachusetts, and i feel quite confident in it, but i get questioned all the time by people i have asked for donations from. I explain, i give the flyers out, and if they don't want to donate, well, they don't have to. I don't think that is all you are talking about though.....

please let us know, 'cause we ALL want to make things better, and if we can, we will.

Hugs,

Suzanne

Sorry, i'm lost too. Whatever it is, we would love to help you on this, but it's hard to figure out what you're talking about.

I THINK what Eric is saying is going to Massachuttes for the Garbage walk Is GREAT... have a garbage walk in your OWN neighborhood, recruit people there pass out flyers where HD Tshirts and talk about your problems with HD and what you need.

Go to your support group meeting or form one if you don't have any and list your problems and come up with suggestions. Any solutions you come up with send them to corporate.

Help one another, Help other families when you can and talk about it to corporate and how you helped.

Do you need transportation? Do you need respite? Can you trade off with other families and how did it work for you? Let corporate know how it worked?

Eric is this something like what you have in mind?

I don't know Pat. In his first post, he says he's tempted to do some finger pointing, and that there's problems with where the money is going, and being used on expensive hotels and stuff, and in his second post, he says lets be nice and just help put in our neighbourhood. Sorry, maybe i will understand it better later, but i'm sure whatever it is Eric, you know you have our support.

Eric

I am all for families helping families - I think Mrspatwolf has the general idea that you were mentioning. I would love to do more outreach and we have a fantastic center director to with with.

Let me know what you have in mind.

Stacy-NJ

Eric,

Are you asking to see some of the money that we go out and raise for HDSA to go more directly to families that may be in monetary distress? I know we have found a couple families in our area that were having some money issues and we couldn't get any help through HDSA so our group members had to help out of our own pockets. Even though we have done a lot fundraising in our community for HDSA. Is this kind of what you are referring to?

Brent

Eric,

Are you asking to see some of the money that we go out and raise for HDSA to go more directly to families that may be in monetary distress? I know we have found a couple families in our area that were having some money issues and we couldn't get any help through HDSA so our group members had to help out of our own pockets. Even though we have done a lot fundraising in our community for HDSA. Is this kind of what you are referring to?

Brent

Hi Eric, a belated Happy Birthday to you as I missed out on the other thread. Also, quit hitting Bambi!

I believe I understand your first couple of posts and your frustration. Please tell us in more specific terms what we can do to help and/or promote change.

Patty

I don't think that's what Eric means, Brent, but I am definitely with you on this. I would like to see a needy family fund for each chapter. Families should use other resources whenever possible but sometimes things just all happen at the same time and they just need a little help. When someone can't pay the rent one month because they can't work because they have two end stage relatives at home to care for and there have been a lot of unreimbursed medical expenses, there should be something in place to help.

too much money on research and not enough even for respite and none for support groups here. I often feel that with HD i'm expected to fund raise constantly.my sister

was supporting my support group which was cancelled because the others died so i'm being punished for living with hd