Muriel: First let me tell you how thankful we are to have you and your team supporting the patient community. Many praises for your efforts; you are second to none!
Now to my suggestion. The patient community needs an assigned member from your staff to help patients source and obtain charitable funding. I believe that there are numerous charities willing to provide grants to patients beyond the two charities that are typically recommended. This effort will not be easy. It will require someone with the ability to network well and the diligence to pursue this objective and not give up. Amyloidosis is typically a non-supported disease when it comes to charitable funding. Herein is the objective; create a list of 10-15 charities ( known to support Amyloidosis ) that can be provided to patients who are in need so they may apply for charitable funding.
My sincere thanks to you and your team!
My diagnosis and treatment with light chain amyloidosis was accompanied by fear. I had wonderful treatment by gifted clinicians. They were not afraid but I was! I attended my first support group two months after having my STC, nine months after diagnosis. Had I known how much information, companionship and hope I would get from the meetings, I'd have traveled far to get to one sooner. Each story I hear, each presenter I hear give me courage and hope. I am 28 mo post STC. My course has not been perfectly smooth but I am feeling strong and hopeful. Thank you Muriel and Amyloidosis Support for all your assistance!
ASG is a shining example. They were instrumental in guiding us as to how to proceed when we were first hit with the blockbuster news that I had amyloidosis.
Their patient support meetings have brought leading researchers and practitioners to patients and their families and in the most generous form imaginable with no charge for their assistance
These stories of patients helped me cope with amyloidosis and I hope that mine will give encouragement to others also.
My oldest brother passed from Hereditary Amyloidosis and his diagnosis was the first any of us had heard of this horrible disease. My youngest brother at 54 is suffering greatly from the same disorder and we are crushed. This site has been a God send of support, information and assistance. Through this site we were able to contact the Dr's who originally handled my older brothers' case. Its an amazing website ran by caring wonderful people and I'm so thankful I landed here on my first online search for info on this condition. Thank you so much.
I have amyloidosis, a very rare condition. I developed it as a result of having an incurable blood cancer. It is one of a number of types of amyloidosis which can be fatal. Many people are not diagnosed until they have end stage disease because it is so rare and can present with such a variety of symptoms. Muriel Finkel, who oversees the Amyloidosis Support Group, Inc., runs an amazing not-for-profit which assists people with all kinds of amyloidosis. She responds immediately to requests for assistance, be it finding a doctor who is an expert treating people with the disease, or referring patients to the latest research articles and drug studies, or providing other kinds of support. In addition, she organizes meetings in various cities in the United States and invites leading physicians to speak at the meetings and help patients figure out how to get the best care available. Since Muriel is so knowledgable and dedicated to the cause, doctors have been willing to donate their time to this group of patients, many of whom are coping with the most serious aspects of the disease which may require a stem cell transplant, and/or a heart or kidney transplant. Amyloidosis is an orphan disease. There are no statistically significant studies or huge organizations to assist patients and caregivers navigate their way. Muriel Finkel and Amyloidosis Support Group, Inc, does a phenomenal job in helping patients and their families cope with this devastating illness.
After being ill for a short time, my husband, Bill was diagnosed January 13, 2004 with Amyloidosis. He passed away February 22, 2004. I found out about this support group and went to several meetings in Philadelphia. This disease is so rare that I had no idea where to turn for any support to help me or my three grown children, get through the grieving process. I was very grateful to hear of others and how they were dealing with this disease.
Although I haven't been to any meetings for years, I like being informed through emails of all the progress research has made.
My husband was a very healthy man taken to soon, 52 years old, and to quick by a disease neither of us heard of. This support group is a place for families to meet others who are going through some of the same health issues and find out where they can be best treated for this disease, I hope this group continues with their wonderful support for Amyloidosis patients, giving hope along the way.
This group was the only place to turn to when I was diagnosed with a non curable disease. I got current information that was not to be found any other place. The members are from all over the world. We all share experiences, solutions, medications, new trials, and other information that can only be learned by having the disease or caring for someone with it.
Can't say enough about the Amyloidosis Support Group. This is a disease few people are aware of, and we were lucky enough to find Muriel Finkel and the Amyloidosis Support Group. Fortunately, our internet search brought us to this group, and thankfully, we were in great hands! It is very lonely and scary to be diagnosed with a disease so few (including doctors!) know much about and this group has been for many - literally - a life saver.
I was diagnosed with Amyloidosis [which is a very rare form of cancer that can attack any or all of your organs and available spaces] in 2013 as the result of a annual health checkup. It was a very lonely feeling because while the clinic where I was diagnosed did know something about it they did not have any patient experience with this. After I moved my treatment to MD Anderson Cancer Center I continued my habitual Internet browsing and became aware of this group and that it held meetings in Dallas, TX. I went to a meeting and found a) others with similar problems, b) a printed piece of literature about this, and c) most importantly other folks who just wanted to make sure that it is not "JUST ME!".
Be assured that it is not "just me" and that there is medical research progress has resulted in new drugs and so, "Help is on the way!" and it is discussed at each and every meeting you will attend.
There will be meetings of this group in Houston at MD Anderson Hospital's conference center starting September 2016.
I was diagnosed with Amyloidosis in 2010 and immediately looked on the Internet for information - what a mistake! The first sight I found said I had 6-12 months to live; needless to say I was devastated. It wasn't until I found AMS and Muriel Finkel that I received correct information, the knowledge of wonderful doctors and the MayoClinic: in other words, hope. This group offers a place to read the correct and the latest information on Amyloidosis, to relate to others with the disease through attending meetings with knowledgable doctors or through an on line forum, to ask hard questions and get honest answers and to feel at ease knowing that we all going through the the same things. A wonderful group!
My brother is still walking and not in a wheelchair as well as a much better quality of life as a direct result of the assistance from Muriel Finkel of ASG. She works with hundreds of people and yet remembers us all and she remembered by brother after one meeting he attended. Thanks also go to Kay Rowley the ASG NW representative that got him to his first meeting. My brother is in a trial for ATTR and is now in the second phase. I go to all the meetings in the Northwest that are held in Seattle and Portland. Doctors from clinics and research facilities all over the US have taken the time and effort to come to us, via the ASG. It is hard to say no to Muriel! Thank God! Most of my family carry the mutation and our generation would not have had a chance without this organization: that gets people to the right doctors, gives info about drug trials, and keeps us abreast of new research and treatments globally. Their website is well set up and easy to follow. You get personal attention. Thanks to all who volunteer!
Shortly after my sister was diagnosed with familial Amyloidosis, I immersed myself in researching about it and stumbled upon this group. From the get-go, Muriel and Kay have been of invaluable help with their deep knowledge, compassion and responsiveness. Meetings and emails are packed with useful information and opportunities to connect with others on this journey. They deserve high marks, and our family's gratitude.
If it wasn't for this group, my family would not have made the contact with the doctors we needed to find relief for our symptoms. Our family has a very rare form of hereditary amyloidosis. After attending the Chicago meeting in 2013, we came away with far more information than we anticipated. This put us on a path for getting the help we needed. And, we have been glad to pass along any new information we learn through the support group.
I attended my first support mtg in Chicago last week end; it was excellent & very informative. Plenty of time with doctors for questions & everyone was so nice! Reading materials good too! A sincere thank you for all involved & the support.
My daughter (who has amyloidosis) and I attended our third support meeting in Woodale, IL and again found it very helpful and informative. This was the first with Dr. Gerts from Mayo and the second with Dr. Abonour from Indiana. Both answered all the questions we had, both during the presentation/question session and one-on-one with Dr.Abonour. Since we are both more familiar with this disease and its problems, we were able to absorb more info. As usual Muriel Finkel did a top-notch job facilitating the meeting. Thank you, Muriel. This is a superb way to be able to hear other peoples' experiences and learn all the latest from the experts. Looking forward to the next meeting in June. People and caregivers please avail yourselves of the opportunity of attending, if you are able, as you will learn more than you will by just reading about this disease and can get answers from the experts in this rare disease. Thank you again for having these support meetings.
Fantastic e-newsletter. The language used is easily understandable and keeps us well informed. Keep it up!
The ASG website is the most complete resource and support for people with any variety of amyloidosis. From early symptoms to diagnosis to treatment centers, patients are guided through the frightening maze that they are thrust into when this rare debilitating disease strikes. In 25 cities, twice a year, ASG brings together expert doctors in the field, area patients, caregivers, and researchers to answer questions, get cutting edge information, learn about drug trials, and give each other sustenance. There is no other group that offers such total commitment to support each individual patient in his struggle.
I would describe the Amyloidosis Support Group, Inc. as a GPS thru a terrible neighborhood on a stormy night and you have no idea where you need to go. The information about this disease has been limited and dated on the internet. My Doctors studied 15 minutes on the chapter called Amyloidosis. I have 20 minute office visits with my Doctors for questions and treatment plans. If I didn't have this support group to go too for answers and directions I don't know what I would have done. Questions don't come from 9-5, they come at 2 in the morning when you can't sleep and you are scared, but somehow, someone is on the end of a keyboard to answer, support and guide you thru some scary thoughts, ideas and road bumps ahead. Now you go back to sleep only to wonder if the treatment you are receiving is the best and what are these side effects I keep having. Again, at the end of a keyboard someone is waiting to tell you; "to be strong it gets easier", "I've had that side effect it will go away" or "call your Doc that doesn't make any sense". Guidance and direction when you need it most. I cannot thank them enough and they will never know how much they have lifted me up. Sometimes I just read what others are going thru and know that I am not alone. Sometimes I share and hope and pray it makes them feel better in their battle, but either way I am stronger and better educated for having joined this group.
Thank you to Amyloidosis Support Group, Inc. for all that you do!
Muriel Finkel of the Amyloidosis support group was the only person that understood my illness. She recommended that I visit the Mayo Clinic as no one in the medical field in Colorado Springs could figure out what my illness was, let alone how to help me. I've been given access to many doctors as the support group visits my area twice a year. I can not say enough for the personnel support and guidance I get from Muriel. I've never met anyone that treat each of the hundreds of Amyloidosis patients as if we are the her best friend. She just has the Biggest Heart. I am blessed to have her.