At the Amyloidosis event this week, I hope your crew, especially from Portland, will focus some time on getting a diagnosis. My Medical team is only a modified first aid bunch, and my doctor will not help me get a diagnosis because he "does not understand Amyloidosis, and you (me) don't look like I am dying."
I was thrown out of the AL FB group without warning or discussion after I got a little testy (steroids anyone?) about having a post deleted without warning or discussion. Wanna feel bad about yourself? Get thrown out of a support group. Fortunately I have supportive family and friends and great doctors and I have achieved complete remission after my SCT in Oct '19. It would have been nice to be able to ask questions of people who have been through it, but oh well. That's no way to run a support group.
This group has been invaluable in my journey as well as my father's journey. Unfortunately my father did from Hereditary Amyloidosis 7 years ago, but his constant desire to find answers and the help of many doctors and this organization brought him answers which have in turn helped me. I am a carrier of the gene and was recently diagnosed as having hereditary amyloidosis. I am almost asymptomatic (some autonomic nervous system involvement, peripheral nervous system involvement and GI involvement) however which has made me incredibly lucky, because I was able to qualify for Onpattro and so I am receiving a therapy which will hopefully allow me to continue on with my life indefinitely the way it is. As of now it isn't affecting me very much. I work full time, play with my son and two pug dogs, go camping, go to music festivals...everything to live my best life. We first learned about the organization in 2011 when my dad was diagnosed and we went to the meeting in Chicago that fall. It was helpful and scary because then there wasn't as much hope, and no medications on the horizon. My husband went to the last conference and he couldn't say enough about how well organized it was, how informational, and about how hopeful it is now. Thank you from the bottom of my heart for giving us hope and a community which we once lacked. It makes it so much more doable when you know you aren't alone!
Vilma in Florida
When I was diagnosed with AL Amyloidosis in 2015, my family and I had no clue what this disease was let alone pronounce it. After reading all the horrible information on the internet, we found ourselves at Moffitt Cancer Center where I found an awesome team and Muriel Finkel’s name came up for ASG. I spoke with Muriel several times and have since been going to as many meetings as possible. I’m still waiting for the day when I will be in complete remission but I’m not done fighting.
Thank you Muriel and the relentless work ASG provides to us dealing with this disease. Thank you and your staff for all your encouragement, information and allowing us to hear, listen and ask questions of those who specialize in the field.
God bless you and your staff for all the hard work on behalf of all Amyloidosis patients,caregivers and families who have provided us with so much hope!!!
I am certain that I would not be thriving today were it not for this support group and the extraordinary Muriel Finkel. I was diagnosed in 2011 and could find little accurate information or medical professionals who knew about the disease other than at the very few medical centers specializing in amyloidosis. Local docs generally had little or no experience with it and access to the experts was difficult at best. Muriel especially and this group in general have facilitate an unimaginable sharing of information and have provided a direct conduit to the experts themselves. The value of the biennial conferences in Chicago cannot be overstated. We not only get to talk directly with the experts and hear about the latest research findings and treatment possibilities but we also bond as a supportive community of patients and care-givers anxious and willing to share our stories and news. What a stunning difference it makes to have hope and to know that you are not alone.
My 23 year-old daughter was diagnosed with AL Amyloidosis in 2017. We quickly realized the massive amount of outdated and mis-information about this disease on the internet and found ASG. Their support groups held across the country, organized by volunteers, offer priceless access to expert doctors and other patients. Knowing there is support out there, and knowing you are not alone in the fight helps with the many challenges to patients, caregivers, and families. ASG is a fantastic organization!
After my husband was diagnosed at Mayo Clunic with AL Amyloidosis in 2009 I found out about the ASG. We attended a meeting in Denver, not knowing what to expect. We *never* missed another meeting! The information from world-class experts was INVALUABLE. It made my husband a better patient and me a much more effective care giver. To have access to these experts is a testiment to Muriel Finkel’s amazing ability to network for the benefit of those afflicted by this rare disease. If you want an example of how one person can make a difference in this world, just consider how Muriel has changed our lives for the better!
I’m so glad to have been referred! It’s really useful to share experiences and get information, especially from doctors and experts on Amyaloidosis. Muriel is an amazing dynamo! Lucky to have her!
Many thanks to the Amyloidosis Support Group for pointing us in the right direction - towards a Center of Excellence, when my Dad was at his most critical juncture in this disease...We were running out of time to get him in the right hands, and thanks to this organization, we got him set up with experienced, leading doctors specializing in amyloidosis at a Center of Excellence. I simply could not imagine going through this experience without the Amyloidosis Support Group - for its support, guidance, experience, and far reach, we are extremely grateful as a family.
i have enjoyed volunteering for this wonderful group since 2009. The patients and doctors are wonderful and everyone at the ASG is a joy to work with.
As a volunteer for this organization, I am very proud to be a part of it. Patient gratitude is outstanding and the doctors are wonderfully generous with their time.
Muriel: I was just cleaning out my desk today and happened upon your business card. I really want to tell you what a benefit the Support Group has been for me. The contact with others similarly afflicted with this unusual problem kept my head above water when I was sinking downward. If I had not attended there never would have been a spcific diagnosis of my Local Amyloidosis! My gratitude to you and the Wills is immense!
Dr. Otis Horton
I didn't find this group until after I had been diagnosed and was already in chemotherapy. However, even with the journey underway, they have made a HUGE difference in giving me access to resources to make a difference. When I first heard that there was going to be a 'support' meeting in KC where we were living at the time, I thought it would be good to meet some other patients. My expectation of what a support meeting would be was blown away when I attended. I had no idea that there would be a doctor(s) who are specialists to give us latest info on the disease/drug protocols AND they would gladly answer questions or give us guidance on our specific case. The knowledge that many patients have and gladly share was amazing and helpful. On top of that, the resources that Muriel has put together as handouts and on the website are absolutely invaluable. In addition to the AmyloidosisSupport.org website (which has TONS of info/resources) the Facebook page is a terrific source of help and Muriel pops up with help on there too. Honestly, I think there has to be more than one Muriel as I really don't understand how one human being could get so much accomplished. After my initial KC meeting, I decided to go to one at Mayo in Rochester so I could hear from more Amy specialists -- at that meeting, two of the Mayo docs gave me great advice on the chemo protocol I was on and what I might consider for the future. (SCT, stem cell collection for future,etc.) When I found out that there was a 'super' meeting in NYC, I was approaching the point where I needed to consider next steps, so I decided to go hear what the next collection of amazing specialists had to say. Invaluable can not capture how helpful they all were. So by attending 3 separate meetings, I had the opportunity to personally hear from over eight top specialists in our very rare disease. All of this is thanks to this non-profit driven by the unstoppable Muriel Finkel and her lovely husband Steve. Two people who turned the loss of someone they cared dearly about to an incredibly helpful organization to try and help others and the doctors who are trying to save us. Words can not capture how much this organization helps all of us.
I was diagnosed with AL Amyloidosis in March of 2017. I also have multiple myeloma. I have had a few different treatments and am now on Darzalex. I attended ASG on July 14, 2018 for the first time and was thrilled to meet Muriel and listen to Dr. Morie Gertz. His presentation to the group answered questions that I didn't even know I had. The attendees who shared their stories were a great benefit to me, and I am sure others, because I was able to see how many people have survived with good quality lives through many different treatments. I look forward to our next group in NYC in October but I know that I can always call on Muriel to get me any help I need in between.
The meeting in NYC, July 14, 2018 was so well attended allowing lots of conversation and insights from other patients and caretakers. The main speaker from the Mayo
clinic, Dr. Gertz, explanation of Amyloidosis was the clearest and most understandable I've ever heard. It was truly a hopeful and well worthwhile gathering.
Muriel, I can't thank you enough for starting this group. Over the years it has helped so many of us with Amyloidosis +\- multiple myeloma. I will be forever grateful to you and your staff for all the selfless work you do to get people on the right track. In honor of Five years in near complete remission and my 60th Birthday I have asked my family and friends to donate to the Amyloidosis Support Group. I couldn't ask for a better gift.
A good friend of mine received a very somber pronostic when diagnosed with amyloidosis: not curable and 2-3 years left. Thanks to this support group (found by googling) , I soon learned that, on the contrary, many people had survived this rare disease and, even better, thanks to a quick reply from a wonderful lady responsible for this support group, my friend was put in contact with a local survivor of the disease. This precious contact meant hope again for my friend as he was given tons of info on treatments (etc.) and names of local experts that he could contact for professional help. I am astonished by the fact that some medical professionals are unaware that they do not have the full picture of a disease... in fact, no one has a full picture of any disease. This support group is absolutely VITAL. Thank you to the wonderful people who run it and thank you to the wonderful people who offer their experience and guidance to their needy peers.
On January 18, 2013, my life changed. I suffered a stroke while eating dinner with my husband of 8 months. While at the hospital they questioned him of my family history, he turned to my sister Ellen Cameron for help. Ellen told the doctors that she had Amyloidosis and our mother and sister had passed away So I was immediately tested and confirmed to also having amyloidosis. My sister, probably had Muriel on speed dial during that time. emails were provided to both me and my husband for support groups in our area and we were put on the mailing list for the big meeting in October. We read several of the articles Muriel sent and worked with the team at University of Maryland and had my Liver Transplant October 2014. I wasn't able to attend the last meeting due to my husbands work schedule. But I participate in every study that is brought to me. And will continue to do so. I read all the emails and keep up with the articles and quiz my doctors on any new information. I have met Muriel and she is a one woman dynamo... she makes you feel very special, and she listens... as if she has nothing to do. Muriels department heads or staff are all helpful, supportive, understanding. Eager to hear your story, and comforting.
Support Group meeting attendees get educational and emotional support. They learn about the disease in plain, easy to understand language from doctors who specialize in Amyloidosis. Newly diagnosed attendees can ask questions and learn from those of us who have gone through various treatments that you can live a "normal" life. Every meeting reviews current and upcoming treatments as well as clinical trials. Additionally information about financial assistance is often discussed. These meetings are a must for anyone diagnosed with this insidious disease.
I was lucky enough to be able to attend the Mayo meeting in Rochester last Saturday. I wasn't sure initially if I was going to like it. However, if you have the opportunity to attend a meeting do yourself and your significant other a favor and attend!
I'm not much of a joiner, but, I must say that the group of people I met were wonderful.
It was heartening to hear from people that had achieved "a response" to treatment, to people that were just starting to deal with this disease, to the two daughters from Wisconsin that attended to educate themselves on behalf of their dad, who hasn't got a confirmation on which form of Amyloidosis he has yet.
It was the first time i have met anyone else who is dealing with AMY either personally or taking care of someone who has AMY.
THe doctors, well they were both wonderful. I spoke with Dr. Gonsalves, what a genuinely caring fellow he is, and in ten minutes I understood more about AMY than I've learned on the Internet in the last 10 mos since the initial finding of AL AMY in my lungs.
DR. Gertz was also informative and caring. Two doctors giving their Saturday up, to help us understand what we are dealing with is extraordinary. If you have or know someone who has Amyloidosis of any kind you owe it to yourselves to attend a meeting to learn about this rare and potentially fatal disease.
I think the best thing about the meeting was learning I wasn't alone with this thing called Amyloidosis. Just getting the opportunity to meet and talk with people that have and or/are dealing with AMY in its different forms was eye opening. I finally met Muriel who I had only talked on the phone or emailed before. She is a most kind and knowledgeable soul. I am looking forward to my next meeting with this wonderful group!
Muriel Finkel was so exceptionally helpful when I called her 3 years ago when my husband was diagnosed with Amyloidosis. I was having trouble convincing him to get another opinion, and her advice helped greatly. I have been in touch with her since then and she is always gracious and caring with her advice.
they are extremely helpful and supportive no matter what kind of amyloidosis you have. Muriel and Paula are the very best of people:) would like to see if they ever get Dr. Gertz to come to a Mid-Atlantic meeting maybe Dr. Skinner
This organization is the best! When my husband was diagnosed with AMY, I was heading in 48 hours for a 6 week assignment overseas and needed answers quickly. I reached out to this organization and received a call back within 30 minutes. I knew where to go for treatment and evaluation and my husband, more importantly, was able to go to a support group in Boston before he ever started treatment. This group was extremely helpful and all of the support meetings are educational. It has meant a lot to us and I credit the care and support from BMC/Amyloidosis doctors and professional staff with his great survival. He has a vibrant and active life.
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.
In 2007 right after my husband was diagnosed with AL Amyloidosis I somehow found Muriel Finkle, founder and head of the Amyloidosis Support Group (ASG). Muriel had THE answer we needed, steering us to Dr. David Seldin at the Boston University Amyloidosis Medical Center who saved my husband's life with a Stem Cell Transplant in 2008 (he's still in Complete Response).
ASG is a fount of knowledge and support----Highly Recommended.
This support group been a great wealth of current and accurate information associated with Amyloidosis. With the knowledge and support that is being transmitted through this network, it has helped tremendously in increasing what questions to ask and a better understand of this awful disorder. The information passed along is indispensable. The support group meetings that I have attended are well worth the time and effort. Have to do a shout out to Elinda and Michael for their efforts for the Philadelphia support group meetings.
Keep up the good work Muriel!!!!!!!! Kudos to your leadership.
Thank you so much,
This is an excellent resource for people who have been diagnosed with the rare disease Amyloidosis. ASG provides a wealth of information and support through their website, by phone, and in meetings at locations throughout the US. They've published a very clear overview brochure on Amyloidosis, available on the website.
My husband was diagnosed and treated over 6 years ago, and this has been an invaluable resource for us. Also, I've met many people in my volunteer work at the Amyloid clinic at Boston Medical Center who say that they've been helped immeasurably by ASG.
this is a well run, total volunteer agency, that provides face to face support to patients, caregivers, family and friends who deal with this insidious disease (25 cities/66 meetings)......also with one call to the 24 hr hot line or with a click of a mouse on their web site map the patient can be directed to hospitals and drs who are skilled in treating amyloidosis. As with any illness early diagnosis and treatment is critical........volunteer turnover is near zero which shows the dedication of its none paid helpers
At the end of a support group meeting, patients as well as caregivers come up to me and thank me for this support group. Prior to this group, misinformation regarding the survivor rates and treatment of amyloidosis was astounding. This group has distributed the most up to date research from the best amyloidosis centers. The knowledge and education that this group provides is invaluable to an amyloidosis patient/caregiver making their healthcare decision. Without this group's input, this disease would still be considered fatal instead of treatable.
My husband was diagnosed with AL Amyloidosis and Multiple Myeloma in March 2014. That same week our son found the Amyloidosis Support Groups' webpage. He emailed Muriel Finkle and also spoke with Kay Rowley. They encouraged him to attend the Portland meeting, which was two days later. Our two sons and I attended that meeting, and it changed the course of my husband's life. Not only were we welcomed by Kay and Muriel, but we also met the oncologist and cardiologist who would in a short time save his life.
ASG through Muriel and Kay keeps our family abreast with all the latest happenings in the world of Amyloidosis. We feel their love and support and know that we are not alone. This time when our family attends the Portland ASG meeting on May 2, my husband will be with us. Thank you, ASG, for helping to save his life. We are grateful.
A family oriented group. Muriel Finkel is an exceptional person whom is available 24/7 to give support and educational advises. She has given us and others care givers and patients the help and support that beyond words can express
WOW!!! i am so HAPPY to see you are still doing this. When Frank Burden was there in Feb 2013 and couldnt get out the support totally lifted his SPIRITS. I would love to Help in which ever way i could in honor of him
Thank You Muriel and all those that were there
Carol Johnson Burden
I'm not sure I can find the words to express my appreciation for ASG. I reached out the the group a few years ago, when my father was first found to have familial amyloidosis. Our family was just THROWN! He was the first to be diagnosed, and no one could make any sense of what was going on. I reached out to ASG on a whim, to just find someone --- anyone -- who could understand. Instantly, you no longer feel alone. The facilitator, Muriel, and the participants respond quickly and with compassion. They are open to share knowledge (and they have a TON of clinical and practical/real-life knowledge). They create a sense of support and empowerment, and do so without pity.
Recently, I have started to lean on ASG again as I was experiencing some scary amyloidosis-like symptoms. I wanted to get tested, but didn't know how. ASG told me how ... within the hour. Folks from Mayo and Boston were offering to help. (Yes, within the HOUR!). Then I tested positive for the gene. The first thing I did was reach out to Muriel to get a plan. I knew she, and the other ASG folks, would be able to talk me off the ledge and EMPOWER me with up-to-the-minute information and support.
There are real people and real experts behind ASG. And you can feel their desire to change the game. When their literature says "to some day turn this disease into a mere nuisance" (or something to that effect :) they mean it. To the core.
Unfortunately, my dad's journey was confusing and sad, and often filled with deep feelings of helplessness. But I truly believe my journey will be different ... thanks in large part to ASG. They got me off to the best start possible. And for that I am truly, truly grateful.
The ASG is a clearinghouse of information. For patients and caregivers this is the site to be on. Muriel Finkle and other support staff members around the country are nothing but angels without wings. As a patient… I am so grateful for all they do.
After a year of tests for increasing ALP level, my husband was diagnosed with AL Amyloidosis in 2012. We found the phone number for this support group online and Muriel answered the phone one Sunday afternoon. She was very confident, knowledgeable, and backed up everything with thorough studies and reports. We are so thankful for all her help and care and great advice for healing treatment at Boston University Medical Center. While receiving his stem cell transplant and high dosage chemo , we attended the weekly support group meetings in the clinic and received so much encouragement and information.
Thank you so very much.
Keep up the labor of love!!
I was recently diagnosed with Amyloidosis, and didn't have a clue where to turn to get more information about treatment, etc.. Fortunately I found the Amyloidosis Support Group website, which put me in touch with the amazing work that this group is doing. It provides great information, feed-back, and support sessions for those of us with this disease. Can't say enough good things about the work of two ladies
who are dedicated to this cause -- Muriel Finkel and Kay Rowley. Any question I have is answered promptly. I have attended one support group session -- in Arizona -- that was a wonderful way to 'network' with other Amyloidosis patients. I am looking forward to attending another one in the Seattle area in September. Can't say enough good things about this organization!!!
It is wonderful to have a place to go and get questions answered. This has been a remarkable resource and comfort. I especially want to say that Muriel Finkel and Kay Rowley have been a God send and are in constant communication with us to get information to us about Familial Amyloid meetings that we needed to go to and trial information for us to check out and participate in. My husband has Familial Amyloids, as does his brother, a sister and one to be checked. His Mother and her 3 brothers also passed from this disease. He has cousins that are also afflicted. We have 3 sons that we were also worried about, but with the trials that are going on at this time, I think they will have a chance at health in the very near future.
When i was diagnosed i felt so all alone and helpless. With the guidance and support of this group i found a great Dr., and feel hope and a future now.
Review from Guidestar
Amyloidosis Support Group has been a great help to me in better understanding my disease, resources available, and advice. I access the site daily, and read most of the posts. Thanks for all your help, Volunteers.
Review from Guidestar
I am the caregiver for my Father, who was diagnosed with AL Amyloidosis in September 2013. He started treatment at our local hospital. I attended a meeting of ASG in NY in February 2014. I believe this meeting saved my Dad's life. If it hadn't been for the advice of the specialists, as well as the support of other patients and caregivers, Dad may have gone through with a SCT his body likely would not have tolerated. He's since selected a different specialist and is continuing with less drastic treatment options.
I am so incredibly thankful to have come across ASG. Having a loved one diagnosed with a strange and rare disease that most doctors don't understand is life altering. It is a great comfort to have this family of caregivers and patients. Additionally, ASG has provided current medical developments promptly, and also works with medical team to help answer questions of group members.
Review from Guidestar
My husband was diagnosed with this somewhat rare condition and when I went searching for information I came across this support group and contacted them. Their response was quick, informative, compassionate and generally just very, very helpful. They pointed me to more information and connected me directly with others in their group who had the same or similar condition as my husband. A member contacted me and described the process of diagnosis he had undergone so to keep us informed of what to expect. He offered to answer any questions and gave his phone number and email for contact information. Everyone we've had contact with have just went above and beyond to help us understand the disease and offer support in a variety of ways.
In addition to receiving amazing support from this organization, I'm also a donor. The support, guidance, resources and amazing work Murial Finkel and the others in senior positions in this organization provide are indescribable for those of us who have been diagnosed with this very rare disease.
Review from Guidestar
Muriel is a godsend to those of us who are diagnosed and provides an invaluable ongoing service and is the center of a large community of support, knowledge exchange and care.
On Oct 17, 2012, my wife got diagnosed with AL Amyloidosis. It was a frantic time because of all the scary info on the web about the severity and general hopelessness of the disease. We got treated by a Multiple Myeloma Dr because we were told that was our best option.
While researching my wife found this support groups' site and we went to our first meeting. What a blessing it has been. We were educated, counseled, comforted and advised. The Doctors who are on the front lines battling this disease were there to share everything they knew to help us with our path.
We changed Doctors and got the CORRECT treatment as a result of being there. My wife would absolutely NOT be doing as we'll as she is, if not for this group.
My husband passed away of amyloidosis in 2004. At that time, not much was known about amyloidosis. I know it is not unusual today to hear the same about amyloidosis, but with Amyloidosis Support Groups networking with hospitals in the field of amyloidosis, having support groups in hospitals, holding conferences, having an on line group for patients and caregivers, booths at medical conferences, those with amyloidosis are no longer alone. I volunteer with the Ohio & Michigan Amyloidosis Support Groups and seeing the patients, families and caregivers interacting together about their symptoms & treatments is heart warming. Otherwise, they would have no one who has walked their walk or would know no one who had this rare disease.