Our guests January 23rd were Drs. John Berk from Boston U Amyloid Clinic
(via Skype) and Jonathan Kaufman from Emory
They gave us their Saturday morning and balanced each other well. Was so great to hear from two experts. Most of the attendees were AL but we had one Familial TTR Family and Dr. Berk was able to answer lots of questions and help a lot with their future journey.
We had an overview of the new NEOD antibody trial for previously treated AL patients with cardiac involvement. The trial is called "PRONT0" as they expect to fill it quickly.
It is only at the original 7 centers where the Phase One trials were but expenses are reimbursed if you qualify. We had one family present that was on the NEOD "VITAL" trial for newly diagnosed patients with cardiac involvement.
Our doctors also touched on the other antibody studies that are taking place at Columbia, ANTIBODY 11-1F4,
and the UK.
We went over the newest alkylator, Bendamustine, the newest IMID, Pomalidomide/Pomalist, and the newest Proteasome Inhibitors, MLN9708/NINLARO/IXAZOMIB, and Carfilzomib/Kyprolis. Lots of drugs in our arsenal should we leave response. Our doctors answered any and all questions and that took us to our 2:00PM closing time in what seemed like no time at all.
Our guest in July 2015 was Dr. Prashant Kapoor Mayo/ Rochester
Saturday January 24 2015 our guest was Dr. Lauren Stern from
Boston Univ. Amyloid Clinic
July 2014 guest was Jeff Zonder MD.
Saturday ,February 1, 2014 ,our guest was Dr. Prashant Kapoor Mayo/Rochester MN
He is young, brilliant and obviously has a passion for treating amyloidosis and that passion was very evident to those in attendance. It is very reassuring to see the next generation of amyloidosis physicians, and if they are all like Dr. Kapoor, we will be in very good hands in the years to come.
Today's group was comprised of mostly AL patients, some had AL & MM, we had one TTR and one localized. One patient came from as far away as Charlotte NC., (about a 5 hour drive) while others came from Alabama and west Georgia along the Alabama line. Others came in from areas east of Atlanta. I thank you all for braving the remnants of the "Blizzard of 2014" to make the trek to Atlanta and contribute to the meeting. Dr. Kapoor delivered a powerpoint presentation that covered all types of amyloidosis and he answered everyone's questions. We discussed the trials that are ongoing or opening soon for the different types of amyloidosis and the mechanisms of how each trial works. I urge everyone to get to a support group meeting if one is held in your area. Getting to meet other patients, hearing their stories and comparing treatments can be very reassuring and enlightening. We each have our own individual journey with this disease, but when we unite as a group we all become stronger. While you may be the only one in your area with this disease, please know that you are not alone. We are all in this fight together!
Saturday JULY 13, 2013 our guests were Dr. Adam Cohen of UPenn and Dr. Jonathan Kaufman of Emory We had patients with AL, Familial and localized in attendance. We discussed the new and upcoming trials for the different types of amyloidosis as well as the various treatments that are currently available. Everyone was able to get their questions answered by the doctors and all that were eligible were given an application for the LLS Patient Assistance program.
Saturday January 12, 2013 our guest was David Seldin MD, PhD. Over 35 patients and caregivers received so much support and education and left empowered.
Saturday, SAT. JUNE 23 2012 our guests were
Dr. Jeffery Zonder, Karmanos Cancer Institute, Detroit Michigan
And Jonathan Kaufman MD – Emory
Saturday, June 4, 2011 GUEST - Muriel Finkel President of the ASG
The Atlanta meeting today (1/29/11) was great....Dr. Vesole of Hackensack and Dr. Kaufman of Emory were great guests....the presentations were interesting, informative and educational and the sharing and Q and A was supportive and wonderful......
Our guests in May were Dr. Belinda Ng - Cardiologist and Robert Kyle MD – Mayo/Rochester
DR. DAVID SELDIN /BOSTON UNIV.MED.CENTER and Dr. Jonathan Kaufman from Emory were our guests..
Muriel is so correct in saying that the Atlanta meeting was wonderful. Although I have been to Boston twice, this was my first chance to meet Dr. Seldin. What a special man he is! He graciously answered all of our questions and also spoke one-on-one with several of our attendees. And as always, he and the Boston team are always so willing to share their knowledge with our hometown doctors. He was very pleased to see how well Brooke is doing...her hair came back very curly and much darker than it was before her SCT. We finally got the chance to meet Edith.....what a fantastic advocate she has been for Willie! Speaking of fantastic advocates, Jill B. was also there with her husband Jim who was looking good and doing well. We met Lynn T. and her brother who unfortunately had lost their mother to this disease just this past week. Everyone shared their stories and we had a terrific breakaway session. The Atlanta Hope Lodge has been so wonderful to give our meetings a home for the past 3 years. It is such an inspiring and uplifting place to be. A patient, away from home, could not have a more perfect place to stay while going through treatments. Special thanks to Rosalinda and the Leukemia and Lymphoma Society for sponsoring the food for our meeting this weekend.
When the meeting ended, we all said our farewells and see you again soon. Because Dr. Seldin has some family in the Atlanta area, he had chosen to stay in town until Sunday. This gave him the opportunity to leave the meeting with Dr. Kaufman and get a quick tour of the Emory Cancer Center. Dr. Kaufman is a like a sponge, willing to soak up all the Amyloidosis knowledge that he can. Needless to say, I was thrilled to see he and Dr. Seldin getting to know each other better. It gives us much hope that one day Emory will be an Amyloidosis Center for the southern states.
To those of you that were unable to attend the meeting, we hope to see you at the next one on May 15th......so go ahead and mark those calendars now! Don't forget Rare Disease Day on February 28th. I have already contacted the Governor's office here in Georgia in hopes that he will make a declaration for that day. Just think of the awareness we could spread if we all wrote a letter to the editor of our local papers and had it published that day.
And lastly, welcome to the group Joyce! You have 2 beautiful daughters (Brooke & Jennie) that I am sure you are proud of. To my other Atlanta group members....go to www.amyloidosisonline.com if you would like to join the yahoo group. Your stories of success just may inspire or uplift someone else!
Our last meeting was Dr. Jonathan Kaufman from Emory – he was warm and friendly and knowledgable...
Dr. John Berk - Director Boston University Amyloid Research
and LLS Rep were wonderful guests at our Feb. meeting
Our July guest was Dr. Suzanne Hayman from Mayo Rochester.
Dr. Hayman's Bio: http://www.mayoclinic.org/hematology-rst/11254050.html and http://mayoresearch.mayo.edu/mayo/research/staff/hayman_sr.cfm
We had a wonderful meeting yesterday (2/8/08) in Atlanta with some visitors traveling in from as far away as Mississippi and Tennessee. We had patients (AL, possible familial, localized and not yet typed), caregivers, friends and family in attendance. Dr.
Jonathan Kaufman, Assistant Professor of Hematology and Oncology, Emory University was gracious enough to stop in and field our many questions. We also welcomed our first familial amyloidosis family to the fold and we were able to offer some literature that may help them decide upon future genetic testing. Education and support are essential in helping those affected by the different types of Amyloidosis and I hope that we were able to supply that yesterday to our attendees. Our next meeting on July 12, 2008 will feature Dr. Shaji Kumar from Mayo Rochester and we hope to see all that are able to make it there.
Amyloidosis Support Groups
2/8/08 Guest was Dr. Jonathan L. Kaufman (credentials [Word Doc])
Dr. Rudi Hrncic of The Binding Site Rep explained Freelite Chains. Since he had worked at Mayo and with Dr. Solomon he sat in for the entire meeting and we mutually enjoyed the company.