San Diego

Covid Update

As most of the world is still facing the effects of the spread of the COVID-19 respiratory virus, the International Myeloma Foundation (IMF) continues to recommend that all myeloma support groups meet virtually.

We take the health and safety of our myeloma support group members seriously and will continue to hold our meetings virtually to ensure the safety of our members. For additional updates on COVID-19 coronavirus, please click this link:
Myeloma Patient Safety and the Coronavirus.

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For more information, please contact

Tom Tucker 760-736-8230

E-mail: [email protected]

 

Sanford Consortium for Regenerative Medicine
Conference Room 1013 A/B

2880 Torrey Pines Scenic Drive
La Jolla, CA 92037
(On road to Glider Port, across from Salk Institute)
Free Parking after 5 PM

Meeting time2nd Monday of each month from 6:30 - 8:30 PM
Meeting Location Sanford Consortium for Regenerative Medicine
2880 Torrey Pines Scenic Drive
San Diego, CA 92037
Get directions

32.8895229, -117.2442172

Upcoming events

IMF Events

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Support Group Events

Aug 09
Monthly Meeting
August 9, 2021 6:30 pm to 8:30 pm
Sep 13
Monthly Meeting
September 13, 2021 6:30 pm to 8:30 pm
Oct 11
Monthly Meeting
October 11, 2021 6:30 pm to 8:30 pm
Nov 08
Monthly Meeting
November 8, 2021 6:30 pm to 8:30 pm
Dec 13
Monthly Meeting
December 13, 2021 6:30 pm to 8:30 pm
Jan 10
Monthly Meeting
January 10, 2022 6:30 pm to 8:30 pm
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Week in Review by Dr. Brian G.M. Durie
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How Our Myeloma Cancer Support Group Got Started

 

Fred Gloor headshot

With courage as his biggest weapon against myeloma, Fred Gloor, with the incredible support of his wife Virginia, had fought valiantly for 12 years against a disease for which there is no cure. It was in 1992 he received a diagnosis of MGUS. Learning that he only had a 25% chance of developing myeloma, Mr. Gloor planned for retirement; a full plate of enjoying life. Just as he retired in 1995 he learned the disease had progressed to myeloma. It was then the battle began in earnest. In the long run, his battle has produced many victories, including the founding of the San Diego Multiple Myeloma Support Group.

In the beginning Mr. Gloor struggled through treatments not knowing one other myeloma patient. After finishing a stem cell transplant treatment in July of 1997, he began attending a support group for patients who had stem cell transplants. It was there that he met two other myeloma patients and the need for a support group dedicated to myeloma became clear. During this same period, Mr. Gloor discovered the IMF and learned that there was no support group in San Diego. The challenge from the IMF to Mr. Gloor was to start a local support group and in his usual courageous manner, he thought “why not?” Mr. Gloor recalls how his life changed when he started the group. He believes myeloma ordained him to help others with this disease in any way possible. Every time he talked with a newly diagnosed patient or family member he gained courage as he helped alleviate their fear and gave them hope. He often quoted a phrase from Dr. Bernie Segal, “there are no incurable diseases, only incurable people.” His straightforward advice to anyone battling the disease was to become an exceptional cancer patient, to be proactive and take control of his or her disease.

In seven short years, with Mr. Gloor leading the charge, the San Diego Myeloma Support Group grew from its initial five members to a very active and well-attended 70-member group. Mr. Gloor believed that without the support group he would not have had the success he had in battling the disease. Thinking back to the beginning, Mr. Gloor recalled how the IMF, by providing information, allows patients to overcome fear and focus on their recovery. Mr. Gloor grew up in San Diego and graduated from Saint Augustine High School. He graduated from the California Maritime Academy, spent three years in the Navy and 30 plus years as a sea going man. Mr. Gloor has sailed most of the Pacific between Alaska to the South Pole, his last 12 years as Master Mariner and Captain of the SS President Harrison.

Jack Williams San Diego Union Tribune Staff Writer
 

THE MULTIPLE MYELOMA SUPPORT GROUP OF SAN DIEGO WISHES TO THANK VIRGINIA GLOOR FOR HER CONTINUED SUPPORT FOR THE MULTIPLE MYELOMA CANCER SUPPORT GROUP IN SAN DIEGO.

“Dear San Diego Support Group Members: In 1989 three people sat in a coffee shop in London talking about what they could do to help make a difference for myeloma patients. Those three people were Brian Novis, Dr. Brian Durie and myself, Susie Novis. Little did we realize at the time how that conversation would not only change our own lives but the lives of thousands and thousands of people around the world. The dream of starting the IMF soon became a reality and in October 1990 Brian Novis, working out of a tiny basement office in our home, officially opened the IMF for business. And as they say, the rest is history. I’d like to invite you to take a walk with me down memory lane to see what we’ve accomplished over the past seventeen years www.myeloma.org. The progress we’ve made is because people just like you, have reached out to lend a helping hand. We couldn’t have accomplished what we have without the support of people from all walks of life and from all over the world – patients, family members, friends, doctors, researchers, corporations and foundations, people who in some way have been touched by myeloma. But before we start our walk, on behalf of the IMF and the members we serve, I would like to express our sincere thanks and gratitude to those who have helped make miracles happen. The San Diego Support Group has a great opportunity. Dr. Durie and the IMF would like to help San Diego to develop as a stronger center for Myeloma development. We plan on educating the San Diego Doctors and keeping them up to date with the latest changes and treatments in Myeloma. This will benefit everyone.” Susie Novis

 

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Awards

 

San Diego City Council Recognizes March 8th, 2016 as Myeloma Awareness Day

Click below to view Previous San Diego City Proclamations

2014 2015

 

San Diego Support Group Members who attended the San Diego City Council meeting to accept the Multiple Myeloma Awareness Month Proclamation – Left to right, Ava Liss, Michele Reioux, Judith Ross, Tom Hedges, Council Member Scott Sherman.

For the 4th year, the San Diego Multiple Myeloma Support Group was recognized as a 2015 Finalist for the “San Diego Business Journal’s” HealthCare Champions Award.  Below are our previous awards.

2010 2011

2014 2015

Multiple Myeloma Support Group in San Diego was selected as a Finalist for a third time
 
The Multiple Myeloma Cancer Support Group in San Diego was selected as a Finalist in the Third Annual “San Diego Business Journal”s” Health Care Champion Award contest. Many of the top healthcare providers in San Diego had entered the competition.Health Care Champions is an event and special supplement that recognizes individuals and/or organizations in the County of San Diego health care industry that are making a significant impact on the quality of health care.

Health Care Categories for Nomination:

  • Health Care Management
  • Health Care Innovation & Research
  • Health Care Educator
  • Community Outreach
  • Physician
  • Nurse
  • Health Care Staff

Multiple Myeloma Support Group in San Diego was selected as a Finalist for a second time

The San Diego Cancer Support Group entered under the Community Outreach category for it’s Multiple Myeloma Support in the San Diego area. The support group feels very lucky to have been selected, not only to be recognized, but also to be presented a Finalist award. For the second year in a row, 2010, the Multiple Myeloma San Diego Support Group was presented with a “Finalists” plaque from the San Diego Business Journal for the category of “Healthcare Educator.” Health Care Champions is an event and special SDBJ supplement that recognizes individuals and/or organizations in the County of San Diego health care industry that are making a significant impact on the quality of health care.

Achievements

Proclamation Videos

San Diego Multiple Myeloma Awareness Proclamation 2016
Click here to watch video

 

San Diego Multiple Myeloma Awareness Proclamation 2015
Click here to watch video

 

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San Diego hosted a Multiple Myeloma event in La Jolla on Saturday, August 23, 2014. Attendees included – left to right, Jodi Pelusi; Elliot Recht; Chawn Tipton and Dennis Kim.

San Diego City Council Recognizes March as Myeloma Awareness Month from IMF Support Group Network on Vimeo.

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  San Diego City Council promotes March 25 as March Is Multiple Myeloma Awareness Day. Left to right: Judith Finlay (The Binding Site), Tom Hedges (San Diego MM Support Group), Thomas Hedges, S.D. City Council President Todd Gloria, S.D. City Council President Pro Tem Sherrie Lightner, Kelly Cox (IMF), S.D. City Council Member Mark Kersey.
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Tucker Poway MM Month 2 6 2014

(left to right): Andrew White, Tom Tucker (Co-Leader San Diego Myeloma Support Group), and Dave Grosch (Poway City Council Member who carried the Proclamation)

The City of Poway proclaimed March 2014 as “Multiple Myeloma Awareness Month” at the March 4, 2014 Poway City Council meeting. Poway City Council Member Dave Grosch presented the Proclamation to Tom Tucker, who received it on behalf of the San Diego Multiple Myeloma Support Group and the International Myeloma Foundation. They were joined by Andrew White, a member of the Poway City staff who is a Myeloma patient.

 

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Dr. Morie Gertz, Chair of the Department of Internal Medicine, at the Mayo Clinic, Rochester MN, and Elliot Recht, past San Diego Multiple Myeloma Support Group Leader at the San Diego Conference

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San Diego Multiple Myeloma Support Group members and guests attend the Millenium seminar in San Diego.

 

International Myeloma Foundation Sponsors Conference in San Diego The International Myeloma Foundation (IMF) in conjunction with the Multiple Myeloma Support Group San Diego, sponsored a national conference on Multiple Myeloma in August of 2008 here in San Diego. The conference being held here shows how the San Diego Multiple Myeloma Support Group is an integral part of the IMF.

Guest speakers included opening remarks by Susie Novis, IMF founder; and Dr. Brian Durie, Chair for the IMF. Other Guest speakers included Dr. Morie Gertz; Dr. Angelina Dizpenzieri, both of the Mayo Clinic in Rochester MN, and Dr. Keith Stewart of the Mayo Clinic in Tucson. One aspect of the conference that was appreciated by all of the attendees, over 300 hundred people from all over the U.S. attended the conference, allowed for “one on one” discussion groups with each of the doctors. Each Dr. spoke about a different aspect of Multiple Myeloma and how to deal with Myeloma symptoms. Subjects ranged from MGUS; smoldering myeloma, Multiple Myeloma treatment therapy and new medications including Revlimid, Velcade, Melphalan and Zometa (one of the newest bone enhancing drugs on the market).

Recommendations for separate tests to be done included bone surveys, serum free light chain assays (one of the newest detectors of Multiple Myeloma); Pet Scans, because they show more than the typical x-ray and MRI scans; the latest drug therapies being tested right now, and a special “one on one” seminar for families, caregivers and friends of Myeloma patients. It isn”t often that a patient can have a “one on one” question and answer session with some of the leading Myeloma researchers and Drs. In the U.S.

 

 

Light The Night Walk

2014 Light The Night Walk

Over 4,000 Myeloma patients, family members and caregivers walked the 2014 Light The Night Walk around PetCo Park in San Diego.
 

 

2013 Light The Night Walk

 

Elliot Recht – Group Member, Volunteer Leader, Champion, & Advocate

In 1998 Elliot Recht felt that he was in the best health and shape of his life. Then he received shocking news; he was diagnosed with cancer, Multiple Myeloma. Like many others, Elliot had never heard of Myeloma before his own diagnosis. He felt compelled to learn, and learn as much as he could. Diagnosed on a Wednesday; on Thursday he found the International Myeloma Foundation; on Friday he called the IMF’s Hotline and was provided information about the support group in San Diego that was started by Fred and Virginia Gloor. The group’s monthly meeting was scheduled for the upcoming Monday night. Less than a week after his diagnosis, Elliot attended his first group meeting. He was grateful to so quickly find a local community of support. Elliot’s Volunteer Leadership for the San Diego support group from 2006 to 2012

"It’s important to educate ourselves, share information, and learn about resources."

When the San Diego Multiple Myeloma Support Group was founded almost 17 years ago, the first meeting had five people in attendance. From those humble beginnings, the group has grown to approximately 300 patients and caregivers. For the past six years, Elliot served as the support group leader and appreciated the “thank you emails” he received after successful meetings. He was able to help new, overwhelmed members—like he once was—become more relaxed and comfortable. More than fourteen years later, that community of support remains an integral part of his life. Support Group recognized in 2009, 2010, & 2011 as Health Care Champion Under Elliot’s leadership, the San Diego Multiple Myeloma Support Group was a finalist for the San Diego Business Journal’s Health Care Champion Award in 2009, 2010 and 2011. Health Care Champions is an event that recognizes individuals and/or organizations in the County of San Diego health care industry that are making a significant impact on a person’s quality of health care. Elliot said, “It’s been a tremendous honor, not only to be nominated, but to be a finalist. We’re competing with prestigious and well established health care organizations from throughout the city.” Advocacy for cancer patients In 2011, Elliot took up advocacy and was able to meet with members of United States Congress to explain the importance of HR 2746, The Cancer Coverage Parity Act of 2011, along with other issues for cancer patients. In 2012, Elliot joined an advocacy committee with other blood cancer patients and continues to educate himself on legislative issues. He plans to schedule meetings with other US Representatives to encouraging them to support programs and bills that benefit cancer patients’ lives. In His Words

“Our meetings are open to patients, family and friends, caregivers, health care professionals and anyone with questions about Myeloma. Fred and Virginia Gloor established the foundation for our group and I was very fortunate to have their support when I was newly diagnosed. I tried to build on what they started.

I coordinated the meetings, arranged the speakers, contacted news media, communicated with health care professionals and sent out monthly emails to our members. We now have 40 to 50 people at our monthly meetings; at special meetings that feature dinner and speakers, we usually have 90 to 120 people in attendance. With a focus on education about Myeloma, I have been able to arrange for Myeloma specialists and others with expertise about Myeloma-related topics speak with our group. In addition, we have a number of long-term survivors among us, who encourage members who have been recently diagnosed.

The group is very fortunate to have had and looks to in the future the International Myeloma Foundation and the Leukemia & Lymphoma Society as group sponsors. We also received much appreciated support from Celgene, Oynx and Millennium Pharmaceuticals, as well as RosArt Multimedia and continuing support from the Fred and Virginia Gloor Estate.

“Through my many years of volunteer leadership, I hope I was able to help you and your families navigate through this disease we share.”

- Elliot Recht

Resources

 

If you wish to join, Make a Donation or make a purchase from the International Myeloma Foundation, you can specify that a portion of your donation go to the San Diego Multiple Myeloma Support Group. International Myeloma Foundation INFOLINE Number 1 800 452-2873 (ask for the INFOline) Mon. – Fri. 9 a.m. – 4 p.m.
 
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Below are web sites you can sign up for and receive up to date myeloma email alerts, news, financial resources, webinars and online forums for both patients and caregivers!!!

International Myeloma Foundation myeloma.org
The Myeloma Beacon www.MyelomaBeacon.com
Smart Patients www.SmartPatients.com
Patient Power with Andrew Schorr www.PatientPower.info
The Leukemia Lymphoma Society http://LLS.org
Cancer Care www.cancercare.org
Cancer Connect www.cancerconnect.com
Multiple Myeloma Research Foundation www.multiplemyeloma.org

 

Sponsors

International Myeloma Foundation
Celgene Corporation
RosArt Multimedia, Inc.
Millennium
Onyx Pharmaceuticals
Leukemia & Lymphoma Society
Fred and Virginia Gloor Estate

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