Scleroderma Information » Scleroderma » The Foundation's problem
Question:
Diane Williams has become a wonderful friend of mine and she certainly was a warrior in the early days to get a support organization up and available for us. This lady cared and still cares so much for the people that have scleroderma. I don’t know how to express the depth of this womans passion for wanting us all to have the support we need. For those that do not know, Diane was the founder of The United Scleroderma Foundation which merged with The Federation to form what we now know as The Scleroderma Foundation. Mark Flapan, Boy what can we say about this man to do him justice. He not only was a great warrior on our behalf to help provide support for many but he was a big inspiration to so many people. We are so lucky to have the legacy of his writings to pass along so his inspiration can live forever. I wish to include Sharon Monskey, Founder and CEO of The Scleroderma Research Foundation in this list of warriors. Even while battling a horrific form of this disease herself she has made an enormous difference in how our government views scleroderma. She and her loyal members have worked endlessly and raised millions (maybe more) for scleroderma research. Those that watched the movie "For Hope" saw Sharon playing herself. The title role "Hope" went to visit her at her office in the movie to discuss what it is like to be newly diagnosed. I was thinking today that if it wasn’t for these founders of the organizations in the earlier days there would be no Scleroderma Foundation or Scleroderma Research Foundation as we know it today. They did what seemed impossible in a time when scleroderma was almost unheard of. They traveled us to what improvement of awareness and what advancements in research we enjoy today. All of the members and workers that went along with them made an enormous dedication to scleroderma also. We think it is difficult now to raise awareness and funds but just imagine what a task it must have been back then. When you think about it in those terms we really have came a long way. Unfortunately we are on a long journey and yet have far to travel. There is still much work to be done and we as members must work to make sure the goals of the foundation are met. Diane Williams has told me that when she began she had a dream of no one with scleroderma having to feel that they were alone. She said that dream is what kept her driving when it seemed impossible. I promised her that I would work the rest of my life to keep her dream alive. I am certain others had similar dreams. We can make sure all their dreams come true by supporting the organizations and joining in to do what we can. I also hope a day will come when we no longer will need support and can meet to rejoice over the finding of the cure for scleroderma. If we all work together all these dreams are reachable ones. Until a cure is found we can work together to bond and network patients and their families so no one does has to feel they are alone. Until a cure is found we can work together to educate the patients, families and the public, to raise funds, seek corporate and other donations and raise awareness of scleroderma. We can make a difference if we all work together. We don’t have to have educations, diplomas or experience in non-profit work or public relations to make a difference. We don’t have to devote money or time we don’t have. We can offer to do whatever it is that we as an individual can offer and when all this is added up it will make a big difference. Whether it is donations of money (however small it may be), donations of time (to work with a group) or just willingness to be a point of contact for patients, your help and your imput will matter. Just using your voice to raise awareness of scleroderma will make a world of changes. Nothing in life is easy and it takes courage to stand up for what you believe in but anything worthwhile always does. I can’t think of anything more worthwhile in my life then to help travel that journey to a cure for scleroderma and along that journey to make sure others know we care and that there is support out here for them. Finding that cure is the answer to my families happiness and security. My family is everything to me so working to remove scleroderma from our lives is a goal I’ll never stop reaching for. — Sherry Messick surviv…@sclerodermasupport.com ************************************************************* Surviving Scleroderma http://sclerodermasupport.com Scleroderma Foundation Greater Washington DC Serving: MD, VA and DC http://sclerodermagw.org ************************************************************* Join Us Online "Together We Can Beat The Odds"
Response:
Hi Ronni: I have been a member of the Sclerderma Foundation for many years. First I belonged to Tri-State Scleroderma Foundation and Scleroderma Federation with Diane Watson in California. (Hope I remembered her name correctly). You may find a lot of information on the internet but the Newsletter fro the scleroderma Foundation is in a class by itself and you can call and they will try and help you find Drs. support groups etc. I too hope more people would join. ……Love Gigi
Response:
I’d like to share a problem — a challenge — I’ve been pondering these days. Maybe you all could help. To survive and thrive, the Scleroderma Foundation depends on membership support and donations. It is a MEMBERSHIP organization, and dues and other donations keep it afloat. The Internet is a wonderful source of information, but it may hurt our overall goals if people with access to scleroderma information/support on the Internet do not join/financially support the SF. Ten years ago, when people were looking for information, they often sought out the scleroderma organizations. Today, they may be less inclined to do so if they find much of the information online. How many people reading this post, for example, are NOT members of the Scleroderma Foundation? The Scleroderma Foundation is not yet the organization I’d like it to be, but it IS the only game in town whose mission is to provide patient/family support, research and education (awareness). If income from dues and donations declines, then the SF is impeded in its efforts to fund research, launch fundraising programs to support a variety of important initiatives, establish media visibility programs, communicate with legislators, physicians, etc. The list of "things to do" is virtually endless; but all of these things are costly. We need to help the SF so it can help us. I’ve often heard people say what "they" (the Foundation) should do — but the truth is that "we" are "they." If we believe the SF should do something, we need to either get involved directly and work on getting it done…..or provide financial assistance (or get others to donate) to provide the SF the ability to get it done. Ideally, both. Your opinions? As Mike Myers, aka Linda Richmond, says, "Talk amongst yourselves. Discuss." Ronni P.S. BTW, if a donor resides in an SF chapter area, his/her donations are automatically sent to the local chapter (not the "national" office) unless designated otherwise — something all donors should be aware of, in my opinion. (Chapters return 30% of income to national.)
Response:
>From: "Sherry Messick" >I wish to include Sharon Monskey, Founder and CEO of The Scleroderma >Research Foundation in this list of warriors. Even while battling a horrific >form of this disease herself she has made an enormous difference in how our >government views scleroderma. She and her loyal members have worked >endlessly and raised millions (maybe more) for scleroderma research. Those >that watched the movie "For Hope" saw Sharon playing herself. The title role >"Hope" went to visit her at her office in the movie to discuss what it is >like to be newly diagnosed.
Great post, Sherry. I’m delighted you mentioned Sharon Monsky, who is one of my heroes. Even when Sharon began the SRF, she approached her task from a business standpoint (she has an M.B.A. from Stanford Univ.) — never as a "mom and pop" organization. That makes a huge difference. She has the kind of business savvy and creative, modern thinking that’s necessary to get real attention and dollars for scleroderma. She is a true role model, and SRF is a model of a small organization with BIG thinking. >We can make a difference if we all work together. We don’t have to have >educations, diplomas or experience in non-profit work or public relations to >make a difference. We don’t have to devote money or time we don’t have. We >can offer to do whatever it is that we as an individual can offer and when >all this is added up it will make a big difference. Whether it is donations >of money (however small it may be), donations of time (to work with a group) >or just willingness to be a point of contact for patients, your help and >your imput will matter. Just using your voice to raise awareness of >scleroderma will make a world of changes.
This is so true. Many of us don’t have money to donate or the time or ability to serve on boards or committees, but we each can contribute a great deal in the area of awareness. I always say that people with scleroderma and their families are the best billboards for awareness. We estimate that about 250,000 Americans have SD (don’t know worldwide figures). If each of these people educate just 4 others about scleroderma, that means we’ll have educated one million people. This is crucial because we need to raise understanding of the disease, generate interest in research, and increase the quality of support required until a cure is found. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Hi Ronni: Sorry I seem to have gotten Dianes name mixed up with the town she came from. I got lots of help from her and her organization…..Gigi
Response:
>Ronni, > Please post the information on how to become a member. I am sure you will >receive >alot of new memberships by doing this. Thank you. >Colleen
Sure! It’s as simple as calling 1-800-722-HOPE and giving credit card information over the phone, or simply sending a check for $25 (cost of dues) to Scleroderma Foundation, 89 Newbury St., Danvers, MA, 01923. Of course, additional donations over the cost of dues are greatly appreciated and are well utilized for a variety of important programs! 
Membership dues entitle you to receive the quarterly newsletter, "Scleroderma Newsline," along with other goodies. Also, if you’re in an area with a chapter, you become an automatic member of that chapter — and receive any newsletters the local group may send out. For additional info, check the SF website at www.scleroderma.org. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
>From: "Sherry Messick" >the internet is a public forum and there isn’t much we can do other >then those of us active online always recommending that our readers join and >support The Scleroderma Foundation. The net is growing day by day and there >will always be new people creating pages, chats, message boards and other >forms of support. The patient to patient contact plus the anonymity is >something many that get online enjoy.
All this online support is wonderful in so many respects, and I certainly wouldn’t want to curtail its growth at all! You and all the other online forum leaders do an outstanding job in referring people to the Foundation. I hope all people realize that SF is a membership organization that relies on dues and donations to remain staffed and to provide services to and for people in the scleroderma community. >I understand what you are saying in one respect. Your fear is that if they >get the support they need online they may not seek support groups in their >local area which in retrospect would mean they wouldn’t join or pay dues to >SF. In my experiences I have found that online support gets them hungry >enough that they want to be more involved with scleroderma functions, >fundraisers and support avenues. They seek out the organizations that >support these activities. So although in theory I can see where your fears >could be realized in my own experiences I have found it to be the opposite.
Glad to hear this! It’s reassuring. >For The Foundation to minimize losses due to support online they could take >the plunge of providing support by them getting a more interactive site that >people in need of support can link into. Maybe give more thought to >approaching the patients a little more. Maybe provide medical information >pages that are medically edited by their medical advisory panel. Perhaps a >board where people could post questions and someone from the foundation >answer. Sort of an online hotline. The possibilities are endless for them to >use to spark interest from the online community. They just have to take this >seriously and approach it just like they would any other public awareness >endeavor. They have to put the foundation out here online among the people. >They have to give the people a reason to go to their site. I realize all >this takes someone at the foundation office to man but it is just some food >for thought. I’ll give it some more thought and probably share some more
These are all wonderful suggestions. The staff and board have discussed improving and expanding the SF website, which is a project we hope our executive director will tackle in the months and year ahead. Keep the great input going! Best! Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Hi Ronni! I have been a member of the Foundation since ‘93. The Newsletter is really good and is an easy source of information on the disease and any new research that is being done. It is well worth the low price. Take care Susan – Hide quoted text — Show quoted text -RSM USF wrote: > >Ronni, > > Please post the information on how to become a member. I am sure you will > >receive > >alot of new memberships by doing this. Thank you. > >Colleen > Sure! It’s as simple as calling 1-800-722-HOPE and giving credit card > information over the phone, or simply sending a check for $25 (cost of dues) to > Scleroderma Foundation, 89 Newbury St., Danvers, MA, 01923. Of course, > additional donations over the cost of dues are greatly appreciated and are well > utilized for a variety of important programs! > Membership dues entitle you to receive the quarterly newsletter, "Scleroderma > Newsline," along with other goodies. Also, if you’re in an area with a > chapter, you become an automatic member of that chapter — and receive any > newsletters the local group may send out. > For additional info, check the SF website at www.scleroderma.org. > Ronni > ~Scleroderma Awareness Is > Key to a Cure~ > SCLERODERMA FOUNDATION > Call 1-800-722-HOPE
Response:
>From: gramos3…@aol.com >I have been a member of the Sclerderma Foundation for many years. First I >belonged to Tri-State Scleroderma Foundation and Scleroderma Federation with >Diane Watson in California. (Hope I remembered her name correctly). >You may find a lot of information on the internet but the Newsletter fro the >scleroderma Foundation is in a class by itself and you can call and they will >try and help you find Drs. support groups etc. >I too hope more people would join. >……Love Gigi
We all owe a debt of gratitude to people like Diane Williams, who founded the United Scleroderma Foundation in Watsonville, CA over 25 years ago. Nancy Wempe, who remains one of the most active members of the Scleroderma Foundation Board (and one of its most proactive and forward-thinking members) worked with Diane Williams from the very beginning. Other pioneers who deserve our gratitude include Mark and Helene Flapan, founders of the Scleroderma Society (later known as the Scleroderma Federation) in New York City. The Scleroderma Foundation’s excellent newsletter, "Scleroderma Newsline," is edited by Marie Coyle, who also has been active since the early days of the Scleroderma Federation. It’s a big job to produce a newsletter of such size and scope, and I’m sure she’ll be delighted to hear your praise. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Ronni, I see where you are coming from and agree in part. The problem is that the internet is a public forum and there isn’t much we can do other then those of us active online always recommending that our readers join and support The Scleroderma Foundation. The net is growing day by day and there will always be new people creating pages, chats, message boards and other forms of support. The patient to patient contact plus the anonymity is something many that get online enjoy. I understand what you are saying in one respect. Your fear is that if they get the support they need online they may not seek support groups in their local area which in retrospect would mean they wouldn’t join or pay dues to SF. In my experiences I have found that online support gets them hungry enough that they want to be more involved with scleroderma functions, fundraisers and support avenues. They seek out the organizations that support these activities. So although in theory I can see where your fears could be realized in my own experiences I have found it to be the opposite. Of course there are exceptions but those usually lie with people that don’t have a group near them or they are homebound and unable to go to local meetings. For The Foundation to minimize losses due to support online they could take the plunge of providing support by them getting a more interactive site that people in need of support can link into. Maybe give more thought to approaching the patients a little more. Maybe provide medical information pages that are medically edited by their medical advisory panel. Perhaps a board where people could post questions and someone from the foundation answer. Sort of an online hotline. The possibilities are endless for them to use to spark interest from the online community. They just have to take this seriously and approach it just like they would any other public awareness endeavor. They have to put the foundation out here online among the people. They have to give the people a reason to go to their site. I realize all this takes someone at the foundation office to man but it is just some food for thought. I’ll give it some more thought and probably share some more — Sherry Messick surviv…@sclerodermasupport.com ************************************************************* Surviving Scleroderma http://sclerodermasupport.com Scleroderma Foundation Greater Washington DC Serving: MD, VA and DC http://sclerodermagw.org ************************************************************* Join Us Online "Together We Can Beat The Odds" RSM USF <rsm…@aol.com> wrote in message
news:19990701164512.29244.00006417@ng-cn1.aol.com… – Hide quoted text — Show quoted text -> I’d like to share a problem — a challenge — I’ve been pondering these days. > Maybe you all could help. > To survive and thrive, the Scleroderma Foundation depends on membership support > and donations. It is a MEMBERSHIP organization, and dues and other donations > keep it afloat. The Internet is a wonderful source of information, but it may > hurt our overall goals if people with access to scleroderma information/support > on the Internet do not join/financially support the SF.
Response:
Ronni, Please post the information on how to become a member. I am sure you will receive alot of new memberships by doing this. Thank you. Colleen – Hide quoted text — Show quoted text -RSM USF wrote: > I’d like to share a problem — a challenge — I’ve been pondering these days. > Maybe you all could help. > To survive and thrive, the Scleroderma Foundation depends on membership support > and donations. It is a MEMBERSHIP organization, and dues and other donations > keep it afloat. The Internet is a wonderful source of information, but it may > hurt our overall goals if people with access to scleroderma information/support > on the Internet do not join/financially support the SF. > Ten years ago, when people were looking for information, they often sought out > the scleroderma organizations. Today, they may be less inclined to do so if > they find much of the information online. > How many people reading this post, for example, are NOT members of the > Scleroderma Foundation? > The Scleroderma Foundation is not yet the organization I’d like it to be, but > it IS the only game in town whose mission is to provide patient/family > support, research and education (awareness). If income from dues and donations > declines, then the SF is impeded in its efforts to fund research, launch > fundraising programs to support a variety of important initiatives, establish > media visibility programs, communicate with legislators, physicians, etc. The > list of "things to do" is virtually endless; but all of these things are > costly. > We need to help the SF so it can help us. I’ve often heard people say what > "they" (the Foundation) should do — but the truth is that "we" are "they." If > we believe the SF should do something, we need to either get involved directly > and work on getting it done…..or provide financial assistance (or get others > to donate) to provide the SF the ability to get it done. Ideally, both. > Your opinions? As Mike Myers, aka Linda Richmond, says, "Talk amongst > yourselves. Discuss." > Ronni > P.S. BTW, if a donor resides in an SF chapter area, his/her donations are > automatically sent to the local chapter (not the "national" office) unless > designated otherwise — something all donors should be aware of, in my opinion. > (Chapters return 30% of income to national.)
no comment untill now