Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 I'd like to share this post that Kathi sent to the HSP group for all of our newer people, and maybe some oldies who don't know or remember our whole story. Kathi refers to Cheryl. Cheryl is Kathi's sister. Cheryl started this because their mother and Kathi had HSP. HSP people have even more of an incentive than we do in working so hard for our cures and that's because there is a high chance that their children will inherit HSP. We work to help ourselves but you know how much harder we work to help our kids. Subj: Re: [HSP] thanks to all - our story Date: 6/22/2004 4:58:26 AM Pacific Daylight Time From: _Kathigeisler1@..._ (mailto:Kathigeisler1@...) Reply-to: _HSP-L@..._ (mailto:HSP-L@...) To: _HSP-L@..._ (mailto:HSP-L@...) Sent from the Internet _(Details)_ (aolmsg://0675cb40/inethdr/2) In a message dated 6/21/2004 11:59:12 PM Eastern Daylight Time, cmontana@... writes: > all it really takes is > one person and then from that one person it grows and grows and grows.. Hi and Sue Me and all, Yes, it is a team. I've been working (volunteering) full-time for our efforts for almost four years, but, there are many others who have given time, talents and treasures and our achievements are the sum total of all of us, together. Not one person. I do a lot of the public stuff and try keep everyone informed, but there are many of us who are making a difference. Some are quietly in the background, supporting operations and organizing things while others lend their hearts and souls to help people in our email groups. Our community is constantly expanding. For all those who've joined more recently and don't know our remarkable history, here's our story: In 1996 Cheryl created the first HSP website to help people (she's a computer programmer). With the help of the University of Georgia, she also set up this HSP List so that people could connect. One of the foremost researchers on our disorders joined so that he could help us and so he could find patients to participate in research - Dr. Fink. A few years later, the same thing happened in the PLS community. In 1999 Reyerse created the first PLS website. In 2000, Mark started the Yahoo PLS Friends group and later, started the PLS News group (for news only). The PLS community was born. After the HSP online community got going, Chadwick decided to hold an event for people to meet. It was supposed to be a backyard barbeque but the interest by our community and Dr. Fink made that turn into our first Conference (Philadelphia). Dr. Fink then hired her to help him recruit patients for research and to organize more Conferences. helped him organize the first International Symposium in May 2000 at the U. of Michigan. 200 people attended - researchers from around the world and people from our community. It was awesome! Unfortunately, at the end of 2001, began to have serious health issues and had to pretty much retire from community efforts. She's still battling health issues on and off (contact Sue Me if you want to contact ). After the Symposium, I started a regional effort in Massachusetts to hold quarterly conferences and meetings and also began to hold events where I traveled for vacations or to visit family. After Shellie Fisher attended a conference I did in Providence, she organized the Hope Science Progress walkathon in VA in 2001 to raise funds for research and I and a handful of other people helped her. We raised over $50,000 and that supported the development of an HSP mouse model in Dr. Fink's laboratory. Around that time, Joe Alberstat began to organize meetings for PLS. Dolores Carron organized the first PLS Conference in Connecticut in 2001. Cecere helped her and coined the word " Connection " as a special name for conferences. Dolores organized the first registered support group for HSP people as well as PLS people, since they are so similar. She holds an annual meeting and there's one this weekend. Since then, I've given the word " Casual Connection " to describe as a smaller gathering where people meet to meet, share, support and learn from one another. Also around that time, Joe created and published Synapse, a PLS newsletter. Later, Mark took it over as publisher and when the SPF started, Thurza took it over. With the help of her husband Jim, they now publish it as a website although she still makes a real paper newsletter for people who don't have computer access. It's $10 per year for a quarterly subscription and is also now published for the HSP community. In 2001, Mark launched a drive through NORD (National Organization for Rare Disorders) to raise money for PLS research. NORD issued Research Awards and published the PLS Physicians Guide, sent to 14,000 neurologists. Thomson also organized fundraising efforts and worked with Dr. Siddique of Northwestern University to help support a PLS Symposium to establish clearer diagnostic criterion, since there is a lot of gray area between PLS, HSP and ALS. That Symposium was held earlier this month and this weekend, there is an SPF Connection in Chicago to present highlights. Dr. Fink will present the highlights at the Research and Beyond Conference on August 28 in MA to help us understand the similarities and differences. SPF awarded a $10,000 Grant in support of the PLS Symposium. The community efforts in 2000-2001 made each of our communities realize that there was a need for a Foundation, and that our communities had the desire and the capacity to create one. People began to consider doing this. The PLS Community created by-laws for a Foundation. Then Mark came to a Conference I held in May 2001 where he met Dr. Fink. Mark asked him about PLS and HSP so he could understand them because his PLS diagnosis was uncertain. Dr. Fink explained they are very closely related as the only diseases caused by upper motor nerve degeneration. He explained that there is often ambiguity in diagnosis, as different neurologists could give different diagnosis to the same person in the absence of family history (about 1/3 of us). Hopefully, the PLS Symposium will help there. He highly recommended that any Foundation should be for both groups of disorders. As tiny populations with a limited number of potential helping hands, Mark approached me about working together to launch one Foundation with a primary mission to find the causes and cures for upper motor nerve degeneration - for both HSP and PLS. And, to provide information and support programs to help people. So, in the fall of 2001, we formed a Steering Committee that was comprised of 20 people from the HSP and PLS communities. We planned the organization of a Foundation and invited people to apply as Board Members. In February 2002, the Spastic Paraplegia Foundation was launched as a national, non-profit charity. Board members and a few other people provided the funds to pay the legal fees to incorporate. I was able to get a $5,000 Grant from The Millipore Foundation to fund our first TeamWalk in VA. Shellie chaired that effort and we raised around $90,000 to launch the SPF. Total revenue that year was $117,000. Last year, the Massachusetts regional group organized the TeamWalk and the fundraising doubled! Our Board of Directors consists of eight individuals. Mark, me, and are names you often see here, but there's also , Annette, and Carolyn. The Board has met four times in person since we launched (at no cost to the Foundation - we cover our expenses) and we have teleconference meetings in between. If anyone is interested in serving as a board member, please contact me. Dr. Fink is the Medical Advisor and he keeps us abreast on the diseases and research and reviews the scientific content of our website and materials. The Scientific Advisory Board is chaired by Dr. Martha Nance and consists of five neurologists distinguished in their knowledge of PLS and HSP. They review proposals and recommend the best research projects for us to fund. Last year, thanks to all of our efforts our first year, a $40,000 Research Grant was awarded to Dr. Marchuk for an HSP research project and a $40,000 Research Grant was awarded to Dr. Fink for a PLS research project. Thanks to all our efforts last year, we have announced $240,000 in Research Grants to award this year! We have more than ten proposals for the Scientific Advisory Board to review. There are many other champions here. Too many to name them all and I fear I'd forget some. But I need to share that although Cheryl retired the original HSP website, she still works in the background to help me with the more technical needs on our SPF website and operating this email group. Thurza and Jim are key members of the TeamWalk committee. Dixon and Don are taking key roles in helping with the Note Card project (will be announcing soon!). Moira and Sue are organizing Satellite TeamWalks in Ohio and Arkansas. Shaidnagle and Doug Brand help us with creative design for things like our Annual Report and Brochure and SPF Logo and TeamWalk Logo. Many of us are coordinating Connections of all types and many of us spend a lot of time as active members of our email groups to give help and support to others. We are amazing. Amazing! I get chills when I think of what we have yet to accomplish. I know what I want to accomplish... best, Kathi Gentner Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I really appreciate getting this story. What an awesome group. It is staggering that so much has been achieved in such a short time. 's oft used quote below says it all. " Alone we can do so little. Together we can do so much. " Helen Keller (1880-1968) My absolute gratitude to everyone who has been involved. Kiwi Our Story -- I'd like to share this post that Kathi sent to the HSP group for all of our newer people, and maybe some oldies who don't know or remember our whole story. Kathi refers to Cheryl. Cheryl is Kathi's sister. Cheryl started this because their mother and Kathi had HSP. HSP people have even more of an incentive than we do in working so hard for our cures and that's because there is a high chance that their children will inherit HSP. We work to help ourselves but you know how much harder we work to help our kids. Subj: Re: [HSP] thanks to all - our story Date: 6/22/2004 4:58:26 AM Pacific Daylight Time From: _Kathigeisler1@..._ (mailto:Kathigeisler1@...) Reply-to: _HSP-L@..._ (mailto:HSP-L@...) To: _HSP-L@..._ (mailto:HSP-L@...) Sent from the Internet _(Details)_ (aolmsg://0675cb40/inethdr/2) In a message dated 6/21/2004 11:59:12 PM Eastern Daylight Time, cmontana@... writes: > all it really takes is > one person and then from that one person it grows and grows and grows.. Hi and Sue Me and all, Yes, it is a team. I've been working (volunteering) full-time for our efforts for almost four years, but, there are many others who have given time, talents and treasures and our achievements are the sum total of all of us, together. Not one person. I do a lot of the public stuff and try keep everyone informed, but there are many of us who are making a difference. Some are quietly in the background, supporting operations and organizing things while others lend their hearts and souls to help people in our email groups. Our community is constantly expanding. For all those who've joined more recently and don't know our remarkable history, here's our story: In 1996 Cheryl created the first HSP website to help people (she's a computer programmer). With the help of the University of Georgia, she also set up this HSP List so that people could connect. One of the foremost researchers on our disorders joined so that he could help us and so he could find patients to participate in research - Dr. Fink. A few years later, the same thing happened in the PLS community. In 1999 Reyerse created the first PLS website. In 2000, Mark started the Yahoo PLS Friends group and later, started the PLS News group (for news only). The PLS community was born. After the HSP online community got going, Chadwick decided to hold an event for people to meet. It was supposed to be a backyard barbeque but the interest by our community and Dr. Fink made that turn into our first Conference (Philadelphia). Dr. Fink then hired her to help him recruit patients for research and to organize more Conferences. helped him organize the first International Symposium in May 2000 at the U. of Michigan. 200 people attended - researchers from around the world and people from our community. It was awesome! Unfortunately, at the end of 2001, began to have serious health issues and had to pretty much retire from community efforts. She's still battling health issues on and off (contact Sue Me if you want to contact ). After the Symposium, I started a regional effort in Massachusetts to hold quarterly conferences and meetings and also began to hold events where I traveled for vacations or to visit family. After Shellie Fisher attended a conference I did in Providence, she organized the Hope Science Progress walkathon in VA in 2001 to raise funds for research and I and a handful of other people helped her. We raised over $50,000 and that supported the development of an HSP mouse model in Dr. Fink's laboratory. Around that time, Joe Alberstat began to organize meetings for PLS. Dolores Carron organized the first PLS Conference in Connecticut in 2001. Cecere helped her and coined the word " Connection " as a special name for conferences. Dolores organized the first registered support group for HSP people as well as PLS people, since they are so similar. She holds an annual meeting and there's one this weekend. Since then, I've given the word " Casual Connection " to describe as a smaller gathering where people meet to meet, share, support and learn from one another. Also around that time, Joe created and published Synapse, a PLS newsletter. Later, Mark took it over as publisher and when the SPF started, Thurza took it over. With the help of her husband Jim, they now publish it as a website although she still makes a real paper newsletter for people who don't have computer access. It's $10 per year for a quarterly subscription and is also now published for the HSP community. In 2001, Mark launched a drive through NORD (National Organization for Rare Disorders) to raise money for PLS research. NORD issued Research Awards and published the PLS Physicians Guide, sent to 14,000 neurologists. Thomson also organized fundraising efforts and worked with Dr. Siddique of Northwestern University to help support a PLS Symposium to establish clearer diagnostic criterion, since there is a lot of gray area between PLS, HSP and ALS. That Symposium was held earlier this month and this weekend, there is an SPF Connection in Chicago to present highlights. Dr. Fink will present the highlights at the Research and Beyond Conference on August 28 in MA to help us understand the similarities and differences. SPF awarded a $10,000 Grant in support of the PLS Symposium. The community efforts in 2000-2001 made each of our communities realize that there was a need for a Foundation, and that our communities had the desire and the capacity to create one. People began to consider doing this. The PLS Community created by-laws for a Foundation. Then Mark came to a Conference I held in May 2001 where he met Dr. Fink. Mark asked him about PLS and HSP so he could understand them because his PLS diagnosis was uncertain. Dr. Fink explained they are very closely related as the only diseases caused by upper motor nerve degeneration. He explained that there is often ambiguity in diagnosis, as different neurologists could give different diagnosis to the same person in the absence of family history (about 1/3 of us). Hopefully, the PLS Symposium will help there. He highly recommended that any Foundation should be for both groups of disorders. As tiny populations with a limited number of potential helping hands, Mark approached me about working together to launch one Foundation with a primary mission to find the causes and cures for upper motor nerve degeneration - for both HSP and PLS. And, to provide information and support programs to help people. So, in the fall of 2001, we formed a Steering Committee that was comprised of 20 people from the HSP and PLS communities. We planned the organization of a Foundation and invited people to apply as Board Members. In February 2002, the Spastic Paraplegia Foundation was launched as a national, non-profit charity. Board members and a few other people provided the funds to pay the legal fees to incorporate. I was able to get a $5,000 Grant from The Millipore Foundation to fund our first TeamWalk in VA. Shellie chaired that effort and we raised around $90,000 to launch the SPF. Total revenue that year was $117,000. Last year, the Massachusetts regional group organized the TeamWalk and the fundraising doubled! Our Board of Directors consists of eight individuals. Mark, me, and are names you often see here, but there's also , Annette, and Carolyn. The Board has met four times in person since we launched (at no cost to the Foundation - we cover our expenses) and we have teleconference meetings in between. If anyone is interested in serving as a board member, please contact me. Dr. Fink is the Medical Advisor and he keeps us abreast on the diseases and research and reviews the scientific content of our website and materials. The Scientific Advisory Board is chaired by Dr. Martha Nance and consists of five neurologists distinguished in their knowledge of PLS and HSP. They review proposals and recommend the best research projects for us to fund. Last year, thanks to all of our efforts our first year, a $40,000 Research Grant was awarded to Dr. Marchuk for an HSP research project and a $40,000 Research Grant was awarded to Dr. Fink for a PLS research project. Thanks to all our efforts last year, we have announced $240,000 in Research Grants to award this year! We have more than ten proposals for the Scientific Advisory Board to review. There are many other champions here. Too many to name them all and I fear I'd forget some. But I need to share that although Cheryl retired the original HSP website, she still works in the background to help me with the more technical needs on our SPF website and operating this email group. Thurza and Jim are key members of the TeamWalk committee. Dixon and Don are taking key roles in helping with the Note Card project (will be announcing soon!). Moira and Sue are organizing Satellite TeamWalks in Ohio and Arkansas. Shaidnagle and Doug Brand help us with creative design for things like our Annual Report and Brochure and SPF Logo and TeamWalk Logo. Many of us are coordinating Connections of all types and many of us spend a lot of time as active members of our email groups to give help and support to others. We are amazing. Amazing! I get chills when I think of what we have yet to accomplish. I know what I want to accomplish... best, Kathi Gentner Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
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