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The IMF Co-Hosts Patient & Family Seminar in Slovakia

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On October 3rd and 4th, in conjunction with Slovak Myeloma Society (SMS) & Patient Club, the myeloma patient association of Slovakia, the IMF co-hosted the second annual Slovak Patient & Family Seminar in Liptovsky Jan in the beautiful region of Low Tatras in northern Slovakia.

It was my pleasure to attend the seminar and have the opportunity to continue to expand the IMF's relationships with patient organizations throughout the world that share the common goal of supporting and improving life for myeloma patients.

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Mr. Hrianka Miroslav, a representative of SMS, moderated the seminar and did a fantastic job organizing a highly informative and enjoyable meeting. The seminar, which welcomed 130 patients, family members, and physicians from different cities across Slovakia, was a great success.

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The seminar began with a patient forum, which included an uplifting testimony from a Slovak myeloma patient who focused on the idea that "every day is a new beginning." This presentation was quite moving and was followed by presentations on activities of several myeloma patient associations in Central Europe. These included presentations from:

  • Ms. Alice Onderkova from CMG (Czech Myeloma Group) - Czech Republic
  • Ms. Kinga Kocemba from Carita - Poland
  • Ms. Margareta Bartosova & Mr. Hrianka Miroslav from SMS (Slovak Myeloma Society & Patient Club)

The second day of the Patient & Family Seminar began with my presentation. I shared an overview of the IMF, our mission, goals, achievements, and the IMF's international initiative: the Global Myeloma Alliance (GMA). Mr. Hrianka Miroslav, meeting organizer, is representing Slovakia in the GMA.

During my presentation, the IMF's message was well received and understood by the Slovak patients. I enjoyed sharing information about the resources and support the IMF provides to patients worldwide.

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Following my presentation, Dr. Roman Hajek of the Czech Republic shared information about new myeloma drugs, treatment side effects, and clinical trials. He also provided personal consultations for patients. The participants paid great attention to this crucial presentation.

One of the things I will take away from this seminar is an appreciation for the remarkable relationship between the Czech and Slovak people. These two countries used to be one, Czechoslovakia, until a political split happened smoothly in 1993. This peaceful divorce is still called the "Velvet Revolution." However, as independent as the countries are now, Czech and Slovak people have an excellent relationship and strongly support each other, which I have seen in their fight against myeloma. I could see this relationship in the very well received presentations from Dr. Hajek and the Czech Myeloma Group. It is an inspirational relationship that should be taken as a great example all over the world.

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Back to the seminar! Day two also featured the following interesting presentations: "Integrative Myeloma Treatment & Logotherapy" from Dr. Pavel Kotoucek of Homerton University Hospital in London; "Physiotherapy and Spa Treatment" from Dr. Eva Kmetyova of University Hospital in Bratislava; "From Diagnosis to Ambulatory Monitoring of the Disease" from Dr. Zdenka Stefanikova of University Hospital in Bratislava; and "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava.

I am very grateful to Mr. Hrianka Miroslav--who is a caregiver to his very brave wife Milada, who has been fighting myeloma for nine years--for organizing such an informative and enjoyable meeting. I am looking forward to attending the 2015 Slovak Patient & Family Seminar!

Nadia Elkebir
IMF Director of Europe and the Middle East

The IMF Strengthens International Relationships in Europe

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The IMF continued to strengthen its international relationships with patients, advocacy groups, and biopharmaceutical companies focusing on myeloma research with meetings in Europe this month.

On September 5th and 6th, the IMF, in conjunction with Czech Myeloma Group Foundation and KPMM (Klub Pacientu Mnohocetny Myelom) hosted a Patient & Family Seminar in Lazne Belhorad, Czech Republic.

I attended the seminar and shared with the more than 110 patients, family members, and physicians in attendance information about the resources and support the IMF provides to patients worldwide.

The meeting marked a special occasion for KPMM - the organization's 10th anniversary. The two-day seminar opened with a well-received video from IMF President Susie Novis congratulating KPMM on its success over the past 10 years.

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The seminar was educational, lively, and enjoyable for all who attended thanks to the tremendous hard work and professionalism of Iveta Mareshova and Alice Onderkova of KPMM. From the medical presentations and patient interactions to the beautiful location of the Tree of Life Resort, complete with a lake, the meeting was a huge success.

The first evening of the seminar also welcomed lively local entertainers: a magician and ballroom dancers. The entertainment and welcoming atmosphere put patients at ease and encouraged them to socialize with one another.

The educational program began during the second day of the seminar. Dr. Roman Hajek presented news about myeloma research and treatment developments, while Dr. Petr Hylena described the accomplishments and activities of KPMM over the past year. 

Dr. Miroslav Hrianka, president of the Slovak Myeloma Society, also attended the meeting and spoke about his group's activities and the treatment landscape for patients in Slovakia. The myeloma communities from the Czech Republic and Slovakia have a close relationship, supporting each other and working together.

Patients living with myeloma told stories about enjoying their lives and experiencing new things no matter the heaviness of the disease, which provided inspiration to all in attendance. We heard about and saw pictures of the exciting life of a myeloma patient who decided with his wife not to allow his myeloma to run his life. He and his family travel the world to hike, walk, swim, and enjoy other physical activities. It was very touching and definitely inspiring.

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The rest of the afternoon included a presentation on changes in social security in the Czech Republic, presented by Lea Janku; a panel discussion that included lively questions from the audience; and breakout sessions for more concentrated Q&A discussions. With beautiful weather, the afternoon Q&A sessions were conducted outdoors by the lake. Dr. Roman Hajek led a session on clinical trials, Dr. Vladimir Maisnar led a session on the management of side effects, and Dr. Petr Pavlicek led a session on alternative treatment approaches.

The meeting ended with an enthusiastic "thank you and see you next year" from all of the participants. This very successful meeting was a wonderful way to celebrate KPMM's 10th anniversary.

I also visited Boudry, Switzerland this month to meet with myeloma researchers at Celgene Europe's headquarters. Celgene is a developer of important myeloma therapies that have made an impact on many myeloma patients around the world. The company's therapies include Thalomid (thalidomide), Revlimid (lenalidomide), and Pomalyst/Imnovid (pomalidomide). Celgene scientists continue their commitment to myeloma with research on additional therapies.

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During the trip, I visited Celgene's Boudry research laboratories, which were impressive and very well organized. I was happy to see the space where the exciting work is being done.

I then shared with 15 researchers and Celgene Europe employees in the meeting room--and many more on video--the important work the IMF is doing with myeloma patients in Europe and around the world. In addition to learning about the IMF's patient education, support, and advocacy efforts, the audience was very interested to learn about IMF-led research projects, including the Black Swan Research Initiative.

I look forward to continuing to expand the IMF's relationships with researchers and patient organizations throughout Europe that share the common goal of supporting and improving life for myeloma patients. 


Nadia Elkebir
IMF Director of Europe and the Middle East


Czech Patient & Family Seminar photos courtesy of KPMM member Mr. Pavel Skarka.

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During the last week of October, I had the pleasure of being a guest speaker at the annual multiple myeloma seminar in Seoul, South Korea hosted by the Korean Blood Cancer Association (KBCA) and the Korean Multiple Myeloma Working Party (KMMWP), a division of the Korean Society of Hematology (KSH).  This was the second time that the International Myeloma Foundation (IMF) had the honor of participating in this meeting to address myeloma patients in Korea, and the opportunity to meet with the team of dedicated physicians and members of the KBCA staff.

More than 250 patients and family members listened to presentations by the KMMWP on transplant, clinical trials, frontline therapy, and relapse. Fortunately, they were also excited to learn about advocacy, which is where I came in. While it has no direct translation in the Korean language, I explained that the word advocacy applies to many activities that meet the dictionary definition of " the act or process of supporting a cause." This can mean educating others about the disease, raising myeloma awareness in the community, or telling your story as a patient to the media or policymakers to illustrate the need for continued innovation in blood cancer and access to treatment for patients in Korea.

The message seemed to resonate with the audience as many patients approached me after the meeting to thank me for my participation and compassion for patients in Korea. I also learned that there is a lot of online advocacy activity already happening through a myeloma patient group affiliated with KBCA, the Korean Federation of Multiple Myeloma Patients (KFMMP).  I had the opportunity to meet with them and learn more about their organization and discuss ways in which we may collaborate to improve the circumstances for patients in Korea. My hope is that there will be much more to report on that effort in the near future.

A brief history of the KBCA:  The Korean Blood Cancer Association is a nonprofit organization that was established in December 1995 in Seoul, South Korea with the mission of supporting patients through education, consulting, support programs, and financial assistance. The association offers various programs that are similar to ours at the IMF and they are run by a compassionate group of patients and social workers.  KBCA also started the Hope Medical Information Center, which is run by nurses and social workers, and offers support programs to patients and their families. It is the only center of its kind in Seoul where patients can come to learn, meet other patients, get emotional support, and participate in a programs including patient mentoring, medical information sessions, yoga therapy, mind healing, and nutritional/cooking classes, to name a few. I was very impressed with the number of classes and programs offered and how they aim to treat the whole patient, physically, mentally, emotionally, and spiritually. 

While we may come from very different parts of the world, it was quite clear that the passion and dedication that we have for the myeloma community is the same from one side of the world to the other, and we will all continue to work tirelessly to support patients and their families battling myeloma.
 
I'd like to sincerely thank the staff at KBCA, HOPE Center, and the members of the KMMWP for your hospitality, your compassion for patients and for the amazing opportunity to be a part of your outstanding work!

We Owe It To Ourselves To Get Involved

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My name is Kathy Cartwright and I have been living with a myeloma diagnosis for approximately 11 years.

Call me what you want--daughter, sister, wife, mother, friend, myeloma patient, myeloma survivor and now, myeloma advocate!

Back in July, while attending the IMF Support Group Leader Summit, I learned that advocacy is not the same old politics-- advocacy can affect each one of us and the care we get as patients.

I am so glad Aimee Martin and the rest of the IMF advocacy team explained some of the simple ways we can influence our local, state and federal governments to pass laws to protect cancer patients and to promote cancer/myeloma research. Postcards for Parity are postcards the IMF produces to collect signatures in support of the Cancer Drug Coverage Parity Act (HR2746). This bill would help get chemotherapies covered equally whether they're delivered orally, intravenously or by injection.

People can get more information on the IMF website, read all about it, and what you can do to help get this bill passed in your state!

I got a bunch of the postcards when we were at the summit, and brought them back to our support group. We had a good response because everyone knows this bill would affect them. Everyone signed them! Most members took extra for family and friends to sign, too. One member's daughter had Aimee send her a batch to take to her church. Her pastor will be making an announcement and they will be getting the cards signed! I also took the cards to the hospital with me and all the nurses wanted to sign them!

Most people have no idea there is a difference in coverage. They are appalled to learn this information, and therefore happy to support the cause!! I am glad I learned about the Postcards for Parity so I can help in this simple way that will have a huge impact on myeloma patients as well as all cancer patients.

We, as citizens and cancer survivors, owe it to ourselves as well as for those who have lost their battle to this awful disease to get involved. Please go to advocacy.myeloma.org or call the IMF to learn more. 


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My Apologies

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To everyone who subscribes to the RSS feed for the blogs--I owe you an apology. I went back and assigned each old blog to a category (i.e., Dr. Durie's blogs or IMF Community Blogs) to make them easier to search. Consequently, all of you got many emails chronicling my updates. I am so sorry. Don't panic, you won't get any more notices of old blogs. Just new, fresh ones will be coming your way.

Again, my apologies.

Abbie Rich
Web Producer

One of the Greatest Gifts I Have Ever Received

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By Kelly Cox

At the IMF, I run the Regional Community Workshop program and serve as a Regional Director of Support Groups. I frequently find myself travelling to patient and medical meetings across the country. My aim is to bring the IMF's mission directly to those affected by myeloma, as well as to the healthcare professionals who serve them.

In June 2011, I was attending the annual meeting of the American Society of Clinical Oncology (ASCO) in Chicago, Illinois. While taking a short break from the IMF booth, I found myself walking the aisles of the convention hall. One of the booths I passed had no visitors, so I stopped to say a neighborly hello.

The DKMS Americas (dkmsamericas.org) representatives were at ASCO to promote their cause and to solicit potential bone marrow donors. The process was simple. A painless swab of the inside of my cheek and I was on my way to becoming part of DKMS's database. I didn't give it a second thought. I practically forgot this ever happened.

In August 2011, I received a call from the New York offices of DKMS. It seemed that I was a possible match for a woman in her early 20s who needed a transplant for acute aplastic anemia. The sample collected from me at ASCO matched all the preliminary selection criteria. Even at that point in time, the whole concept of being a donor remained pretty abstract for me.

Things started becoming a bit more "real" over the following 4-5 days when I started donating vials of blood for the next stage of the matching process. In total, 21 vials of my blood were collected at a local Los Angeles clinic. The next step could not take place in LA, so it was time for me to fly to the Alta Bates Medical Center in Berkeley, CA.

They were so nice to me. They took great care of me and my wife, Mary. My niece and Mary's best friend were with us for support. The day before the collection procedure, we walked around the Berkeley campus, had a sandwich and some gelato. It was a beautiful, sunny day. I felt so happy and so excited in anticipation of the next morning. I stayed up most of that night because I was too energized and giddy to go to sleep. The mere thought of what was to come gave me goose bumps.

At 7 a.m., as I was waking up from the anesthesia, my bone marrow was already aboard a plane heading for an unnamed destination on the East Coast where the recipient was waiting. 176 punctures in my back and pelvic bones yielded 1.5 liters of bone marrow, more than enough for the recipient's transplant. As I lay in the hospital bed recovering from the bone marrow "taps," watching the two pints of blood I had "banked" being re-infused into me, the magnitude of the experience began to sink in.

Now let me back up for a moment. I must confess that I read none of the materials given to me in preparation for the collection procedure. I just didn't want to know what I was getting myself into. In hindsight, maybe this was because I did not want to learn something that might have discouraged me from moving forward. I felt fully committed and I wanted nothing to stand in the way.

The only question I remember asking in advance was addressed to Dr. Morie A. Gertz of the Mayo Clinic in Rochester, MN.  Dr. Gertz is a member of the IMF's Scientific Advisory Board, a frequent faculty presenter at the IMF's patient education meetings, and an all-round great guy. He told me that a patient with acute aplastic anemia had a 95% chance of survival after a well-matched donor transplant. That was all I needed to hear.

Being a donor is a personal choice. While I certainly appreciated all the support I received from friends and family members throughout the process, I did not expect the outpouring of positive messages I received via my Facebook page, many of them from strangers or from people I had lost touch with over the years.

Oddly, the emotional impact of the entire experience hits home now, after the fact, more than it did before or during the donation process. I get choked up when I think of it and, especially, when I think of that young woman. I hope that the transplant was successful and that it has given her a fresh start. I catch myself wishing that she has a full and productive life and, whenever she is up for it, I hope that she will find a way to be of service to someone else who is in need of help.

The donation was anonymous. While I would love to meet my recipient, there is no telling if this will ever happen. In the meantime, I would want her to know a few things about me. I am 53 years old and I have spent most of my life trying to be of service, trying to make this world a better place. I work for a wonderful non-profit organization, alongside colleagues who spend each and every day making the lives of others better and healthier. I have a newfound empathy and admiration for the myeloma patients I work with who undergo transplantation as part of their cancer therapy.

I've been told I have a big heart and I really do I care about helping people. I feel honored and grateful to have had an opportunity to be a donor. If she ever needs it, I will be here for the same recipient again in the future. And I have gone on to donate blood and platelets through two additional organizations in hopes of helping more people.

Emotionally, spiritually, and intellectually I am absolutely blown away by the experience. And I am still struggling to wrap my mind around the concept of possibly saving a life. Without a doubt, this was one of the most important events and accomplishments of my life.

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Have you ever had the desire or the need to sit with a world-renowned myeloma specialist to learn about and ask questions about your own or your loved one's disease?  How about four world-renowned myeloma specialists?  We thought so!

 With that in mind, the International Myeloma Foundation created one of our flagship programs back in 1992, and we have been holding them ever since: Patient & Family Seminars.  Seminars are offered throughout the year in the US and in other countries.  The seminars are usually held over a Friday and Saturday and cover a wide range of issues, including: How to be a Better Patient, Management of Side Effects, Understanding Scientific Literature, Myeloma 101, Best Therapies for Elderly Patients, Stem Cell Transplantation, Management of Bone Disease, Clinical trials and New Drugs. 

The knowledge gained will empower you.  The experiences shared with other patients and caregivers will enrich and strengthen you.

Our 2011 Patient & Family Seminars in the US:

Boca Raton, FL - February 25-26 SOLD OUT

San Francisco, CA - March 11-12

Dallas, TX - July 15-16

Philadelphia, PA - August 26-27http://

Click here to register online or register by phone, please call (800) 452-2873.  Don't delay.  Hotel discounts are only valid up to 30 days prior to each seminar.

If you are unable to attend one of these events this year, we have made available a free DVD of our Los Angeles 2010 seminar.  To obtain one, just give us a call at (800) 452-2873.  There are also a number of videos from past seminars that can be viewed online.
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