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
Hello Everyone,
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.
Paula Schmitt
Amyloidosis Support Groups
http://www.mayoclinic.org/bio/12620637.html
http://mayoresearch.mayo.edu/mayo/research/staff/Kumar_SK.cfm
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.
