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CLINICAL TRIAL – FAMILIAL AMYLOIDOSIS- TTR – ISIS
FACTS AND PROTOCOL FOR ISIS TRIAL (pdf)
DOXYCYCLINE – ALL TYPES OF AMYLOIDOSIS
CLINICAL TRIAL- AL AMYLOIDOSIS - ANTIBODY – NEOD001
NEOD001 FACT SHEET (pdf)
Carfilzomib - Patients Previously-Treated Systemic Light Chain Amyloidosis
AL = Bendamustine and Dexamethasone
Phase III trial of MLN9708 with Dex vs. physicians choice
For TTR ONLY- TRIAL AND SURVEY
Amyloidosis Support Groups
Welcome to the Amyloidosis Support Groups website. We hope you will find everything you need to know about what is happening in the world of support and awareness for Amyloidosis patients, care givers and those who have lost some one to this insidious disease.
Support can come in many forms. When one is diagnosed with a rare disease such as amyloidosis; just seeing the word amyloidosis on an 8 1/ 2 by 11 sheet of colored glossy paper next to the words, “YOU ARE NOT ALONE” or “MEETING” can be supportive. The diagnosis can be a punch in the gut to hear; but to then to walk out of the office and not see a brochure, or any piece of “official” paper among the hundreds in the doctor’s office or clinic, with the word “AMYLOIDOSIS”, can be the biggest let down of all.
Our toll free line 1-866-404-7539 is a support mechanism that is not only important to the patient who sees the paper; but we have it up on the internet search engines for those who are panicky and frantically looking for help during the early days of the search. We are hoping they find us before they read the sometimes unreliable articles that may frighten or lead them down a wrong path. There are literally millions of articles on amyloidosis, so that being high up on the search engines is also vital for support. Linkage to hospitals and related sights helps elevate one on the search engines.
We then can direct the patient to a center of excellence and invite the patient or caregiver to join a local meeting in one of 21 cities in the USA and Canada, listed on our website, and also invite them to join our on line group on Yahoo, with over 1300 patients and caregivers from the USA and other countries. Again, to just know these groups exist, is supportive; but to belong or attend is the ultimate in support. We have received hundreds of letters and emails every year praising the existence of these groups. Patients helping patients is important, as so many do not wish to bring up certain questions in the office. We always invite doctors that know amyloidosis to our meetings, for educational help and guidance, and also have our ASG Advisory Board doctors on hand to assist with certain questions that come up on the online group. Some of these questions are really not designed to be handled by the peer group as they require medical expertise. Having a doctor for educational backup has proven to be an important part of peer group support. The patient and caregiver often become empowered and assume the role of self-advocacy, which helps all.
Over the years, we have added various goals and objectives to our Amyloidosis Support Groups Charity, relating to support and grass roots awareness. These are helping the groups by helping others with grass roots awareness, and fundraising projects. Another group project that has been very successful, over the years, is a grand rounds held at a local hospital. Occasionally during one of our meetings, an attendee will express interest in educating the local hospital, that misdiagnosed, or delayed diagnosing a loved one. The group will then take on the project of helping to raise money, so that a grand rounds can be presented at that hospital (and hopefully a nearby Veterans Administration (VA) hospital as well). The patient is then left to schedule the presentation and coordinate the event, with the local hospital, and one of the centers of experience. These have been very successful, and is done annually now in some hospitals.
We now hold a special support meeting for the familial amyloidosis patients (TTR and non TTR) who feel neglected at other meetings….we do this every other year and at out last meeting in Chicago 2011 we had over 170 families from all over the USA and Canada.
We have also added a public policy liaison to our Board, to keep us informed as to what is happening in the various government agencies that would relate to amyloidosis advocacy, treatment and research. We have been able to form coalitions with other rare disease organizations, for advocacy purposes, and further our cause while helping others.
By attending amyloidosis symposiums we are able to distribute information to the groups about clinical trials, and other new breakthroughs on the horizon. This helps with education and support and is invaluable to our members. They need to know we are out there learning what is cutting edge. Our website has grown to be educational as well as supportive.
The ASG is in a constantly evolving state along with the medical world of amyloidosis. We have seen it grow from its dark ages, to the treatment and option days of today. Our quote on our website says it best. It was taken from one of our first meetings in Southern California with Dr. Robert Vescio, when he said, “Someday, this disease will become a treatable nuisance.” It seemed a far-fetched thought at the time, but certainly not so now.
In 2004 we started over a dozen support groups around the U.S. and helped in Israel and Australia. Now in our 8th year, with over 20 groups in the USA and still growing, it is our goal to continue to start new groups, while maintaining those already established, and help them to be self-supporting and self-sustaining. One of the major ways of doing this is via via the receipt of donations. Donations are welcome for the note cards and other awareness items - and in general to help the Amyloidosis Support Groups. We are a 501 (c)3 Non Profit Charity and donations may be tax deductible (please check with your tax specialist).
We thank the Amyloidosis Doctors that have helped us with meetings and information, and so many others, too many to mention here. All are appreciated more than they will ever know. They also help as advisors, (see the about us section) for our on line group, www.amyloidosisonline.com. We can't leave out the hospitals, that make available rooms for our meetings, and all of those special people that helped us launch the web site and the meetings, from Steve, Mike, Andy, and Robin, the Madsen’s, Prices, Lado’s, Sue Smith, Steve, Jennifer, the late Jim Cashman, Ellen, Jean & James, and so many more too numerous to mention. Onward and upward, and one day this disease to quote Dr. Vescio of Cedars Sinai will be a “treatable nuisance”.
We are dedicated to the Support of Amyloidosis patients and care givers and former care givers. Our goals are to set up and help maintain peer group Amyloidosis Support Meetings, and by raising funds through donations, help the groups to be self sustaining, and on going as long as necessary. We will also set up new groups where needed when funds allow. Further goals and our mission statement are elsewhere on this site.
The President of the Amyloidosis Support Groups is Muriel Finkel, Vice President Jennifer L. Celano, Treasurer Stephen D. Finkel, and Secretary Elinda Lado. For more information about Amyloidosis Support Groups you may e-mail firstname.lastname@example.org or call toll free USA 866-404-7539, or 630-350-7539.
232 Orchard Drive
Wood Dale IL 60191
Toll Free Hot/Help Line 866.404.7539
847-350-0577 - fax
The people who make a difference
in your life are not the ones with
the most credentials, the most
money, or the most awards.
they are the ones that care.
Amyloidosis Support Groups
1-866-404-7539 TOLL FREE USA
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