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The International Myeloma Foundation Reports Live from the 2013 ASH Meeting in New Orleans

IMF Social Media Team at 2013 ASH

Follow us on Twitter #ASH13IMF

Click here to view our Blogs

ROBIN TUOHY

Robin Tuohy is caregiver to her husband, Michael, who was diagnosed with multiple myeloma in 2000 at the age of 36. But her outreach to myeloma patients extends beyond her home: Robin is IMF’s Senior Director of Support Groups. At this year’s ASH, she will act as tour guide through the various programs at ASH for a group of 12 myeloma patients and support group leaders. Each day, Robin will lead the group as they sit in on oral presentations, attend educational programs and participate in myeloma-specific events. 

Robin urges Twitter users “to follow me and all the support group leaders attending ASH with the IMF.” Each day the leaders will be writing blogs, video-blogging and Tweeting live – all aimed, Robin says, at spreading “the hope and excitement for our futures.” 

Follow Robin on Twitter at @IMFsupport

Click here to read Robin's blog about ASH 2013

JERRY WALTON

Jerry Walton, 68, is a 33-year Navy veteran who retired from active duty in 1998 in Virginia Beach, VA. He taught math in a local public school until June 2007, the year after he was diagnosed with smoldering multiple myeloma. A visit to an IMF Patient & Family Seminar changed Jerry’s life, inspiring him to start the Southeastern Virginia Multiple Myeloma Support Group. He is also working with the IMF to establish a new Veterans Against Myeloma webpage with key information and links helpful to veterans with the disease. 

Jerry is excited to be one of the myeloma support group leaders invited by the IMF to attend this year’s ASH meeting. He anticipates learning more about the many new novel therapies, the effectiveness of various drug combinations, the role of stem cell transplants, the Black Swan Research Initiative and treatments for specific types of the disease based on genetic factors. 

Jerry’s wife Lindsay is a nurse in a family medical practice. He has two sons, Jonathan and Michael, both in their 30s. 

Follow Jerry on Twitter at @IMFjerryMYELOMA

Click here to read Jerry's blog about ASH 2013

 

MICHAEL TUOHY

Michael Tuohy was diagnosed with multiple myeloma in 2000 at the age of 36. The following year, with the IMF’s help, he and his wife Robin started the first myeloma support group in Connecticut. Michael has attended previous ASH meetings with the IMF and this year is looking forward to hearing the current status of new research in myeloma. His focus at ASH will be the relapsed and refractory setting and the benefit of maintenance therapy. 

Follow Michael on Twitter at @IMFmikeMYELOMA

  CINDY RALSTON

Prior to Cindy Ralston’s diagnosis in 1995 she had never heard of multiple myeloma. But within a year of finding the IMF she started the Kansas City Multiple Myeloma Support Group. Cindy, whose oncologist continues to monitor her quarterly, credits the IMF with helping her grow her local support group and aid area myeloma patients. She has attended ASH in the past with the IMF and this year hopes to return to her local community with increased awareness of the various clinical trials that are underway. During ASH she will blog and tweet to the myeloma community at large. 

Follow Cindy at @IMFcindyMYELOMA

Click here to read Cindy's blog about ASH 2013

  ANNE PACOWTA

Anne Pacowta was introduced to the IMF when her husband Jack was diagnosed with myeloma. At a local myeloma support group they learned about the disease and shared their experiences. Then, when Jack retired early, they moved to Florida and started their own support group in Jacksonville with the help and direction of the IMF. Anne led her support group for five years, after which she was invited to join the IMF staff. She has been the Florida Regional Director of Support Groups since 2011.
Anne will attend ASH for the first time this year and looks forward to sharing information about the latest research in the fight against myeloma. 

Follow Anne on Twitter at @IMFanneSUPPORT

Click here to read Anne's blog about ASH 2013

  TERESA MICELI

Teresa Miceli has been a nurse at the Mayo Clinic in Rochester, MN, in the Bone Marrow Transplant program and has worked with myeloma patients since 1991. She’s been a member of the IMF Nurse Leadership Board since 2006 and currently is a transplant coordinator. Teresa became affiliated with the Multiple Myeloma Sharing Sessions in Rochester in 2007 and three years later became the acting meeting facilitator. She’s attended ASH for many years, the last three in association with the IMF as the nurse liaison. “There is so much to learn and discuss as a group,” she says. “It is an inspiring experience.” 

Follow Teresa on Twitter at @IMFnurseMYELOMA 

NICK MENEDIS

Nick Menedis was diagnosed with multiple myeloma in 2006. Along with his wife Sandy, he founded the Columbus, Ohio myeloma support group. Today Nick is in remission, on maintenance therapy and is looking forward to attending ASH with the IMF for the first time. “It’s an honor to have this opportunity,” he says, anticipating hearing and sharing the latest information on myeloma clinical trials as well as the educational presentations he will attend. 

Follow Nick on Twitter at @IMFnickMyeloma

Click here to read Nick's blog about ASH 2013

 

PAT KILLINGSWORTH

A medical columnist and blogger from Weeki Wachee, Florida, Pat Killingsworth specializes in writing about myeloma. He’s a columnist for the Myeloma Beacon, a featured blogger for the IMF and hosts the daily MultipleMyelomaBlog.com. Pat has written three books about multiple myeloma: Living with Multiple Myeloma, Stem Cell Transplants from a Patient's Perspective and New Multiple Myeloma Therapies from a Patient's Perspective.

Pat is himself a myeloma patient, currently in remission. His travels take him across the country, where he speaks to patients, oncology nurses and physicians. Pat's story stresses the importance of patient education and hope—lots and lots of hope, as he says.

Follow Pat on Twitter at @HelpWithMyeloma and @HelpWithCancer

Click here to read Pat's blog about ASH 2013

 

LINDA HUGUELET

Linda Huguelet, who was diagnosed with myeloma in April 2010 at age 46, co-leads the Chattanooga Multiple Myeloma Networking group with her husband Jack. Linda has always been interested in the annual ASH meetings, typically following the results on the IMF website. This year, for the first time, she will attend ASH herself and plans to share the experience by blogging and tweeting daily, focusing on maintenance therapy and the emerging antibody treatments. 

“Experiencing the presentations first-hand will allow me to share a more comprehensive overview with my group,” Linda said. She intends to pass along news about all the encouraging research taking place. 

Follow Linda on Twitter at @IMFlindaMYELOMA

Click here to read Linda's blog about ASH 2013

  CYNTHIA CHMIELEWSKI

Cynthia Chmielewski is proud to be a Jersey Girl. She was born and raised in the Trenton area and attended Rutgers University, where she earned degrees in Psychology and Elementary/Special Education. Then, after suffering for two years with debilitating back pain that was misdiagnosed as degenerative disc disease, Cynthia’s doctors told her that she had myeloma. Today, she’s in partial remission thanks to novel therapies and continues a maintenance protocol that allows her to enjoy an excellent quality of life. She and her husband John have been married 26 years and have a daughter, Candace.

Cynthia demonstrates her appreciation for her good fortune by giving back to the myeloma community. She has been part of the Board of Directors of the Philadelphia Multiple Myeloma Networking group for the past four years and is active in the IMF’s Myeloma ACTION committee. She speaks at support groups throughout the country, encouraging patients to be active participants in their healthcare. Toward that end, at this year’s ASH – Cynthia’s second year attending with the IMF – she hopes to learn about the progress in monoclonal antibody trials and to better understand Minimal Residual Disease (MRD), how it's measured and whether it will be a goal of all treatment in the future.

Follow Cindy on Twitter at @MyelomaTeacher

Click here to read Cindy's blog about ASH 2013

  YELAK BIRU

Yelak Biru has been associated with the North Texas Myleoma Support Group for the last 17 years and co-leading the group for 12.  Yelak is excited about the opportunity to again attend ASH with the IMF and he expects to learn about advances in research and the latest clinical trials. He plans to share this information – and the hope it provides – with his local support group members, in part via blogging and tweeting from ASH. He is most looking forward to sharing his thoughts on the IMF Satellite Symposium on “Providing Best Options for Myeloma Treatment in 2013” ; hearing updates on the IMF’s Black Swan Research Initiative; and attending the IMF’s Senior and Junior Grant Award Program. 

Follow Yelak on Twitter at @NorthTxMSG

Click here to read Yelak's blog about ASH 2013

 

JACK AIELLO

Jack Aiello had three young children – ages 10, 14 and 16 – when he was diagnosed with stage III multiple myeloma. That was in 1995, when Jack was 45. Soon thereafter, he attended a local support group meeting and realized how important it was for him to see someone living and breathing with myeloma. Today, he is proud to help facilitate the San Francisco Bay Area Myeloma Support Group.

Jack has seen great strides in myeloma treatment over the past 18 years. Each year at ASH he looks forward to hearing about clinical trials focusing on new drugs, treatment protocols and quality of life issues. Today Jack is a strong proponent of patients participating in clinical trials so that tomorrow our children and grandchildren – he now has three – will know myeloma and other cancers as curable diseases. To help share crucial knowledge with other patients Jack will once again blog from ASH, as he has in the past while attending with the IMF. 

Follow Jack on Twitter at @JackMAiello

Click here to read Jack's blog about ASH 2013

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Клиническое значение электрофореза белковых фракций