A Peek at the IWMF
This is the second in a series of articles examining the work undertaken by patient organisations to help those affected by WM.
Waldenstrom’s macroglobulinaemia (WM) is a rare, slow growing blood cancer.
Approximately three in one million people are diagnosed with WM every year in the USA.
In Europe, approximately five in one million people are diagnosed with WM each year. WM is classified as an orphan disease, i.e., one so rare that funds for research and enough patients for clinical trials are scarce. Treatment options for WM are often based on research undertaken in other disorders.
The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) got its start in 1994 when Arnold (Arnie) Smokler, a pharmacist living in Washington, DC, was diagnosed with Waldenstrom’s macroglobulinaemia (WM).
“Because he had an enquiring mind, he went to great lengths to learn about this incredibly rare disease,” said Sara McKinnie. Sara is the office manager at IWMF. She is also responsible for administrative services.
Not only did Arnie have an enquiring mind, he was also computer savvy for the time and able to find information by electronic means.
“He reached out, via email, to people worldwide and found doctors in the Maryland and DC area who told him about other patients in the USA and outside the USA who had WM,” said Sara.
Through these efforts, a support group was formed comprising 21 people and by 1995, Arnie was sending a newsletter to 125 people with WM.
Following his retirement in 1998, Arnie created a more formalised organisation which was the IWMF as it’s known today.
“He was definitely a pioneer in WM. When he formed the first Board of Trustees, they all had the same goals and were really intent on spreading awareness through the creation of patient resources so everybody who came along and was scared and confused and might not know how to pronounce their disease would have some place to start,” said Sara.
The objectives of the IWMF are to:
- Offer mutual support and encouragement to the WM community and others with an interest in the disease;
- Provide information and educational programs that address patients' concerns;
- Promote and support research leading to better treatments and ultimately, a cure. The work that the IWMF started doing was crucial for patients with WM.
“All the initial publications and information available on the internet, via the National Cancer Institute, were erroneous,” Sara said.
First ASH Meeting
Sara joined the IWMF in 1998 where she was initially hired part-time to prepare bank deposits, answer the phone and undertake data entry. However, within two years of joining the organisation, Sara had to take on a much bigger role.
“The IWMF was about to go the American Society of Hematology (ASH) annual meeting for the first time when Arnie had a stroke. I was asked to go in Arnie’s place and I thought ‘Great, I’ve done trade shows,’ although they were for the music business,” said Sara.
While it felt a bit like baptism by fire, Sara said she learned about WM and the frustrations experienced by patients as a result of being misdiagnosed.
“Until this meeting, I hadn’t been involved in any of these sort of things. I was not articulate whatsoever,” she said.
Today, Sara manages the IWMF’s Business Office, which is based in Sarasota, Florida, in the USA, and reports directly to the IWMF Board’s Executive Committee.
“We’re a fulfilment centre and I’m involved in coordinating most of the educational programmes as well as the partnerings and collaborations we do with other organisations, such as the Lymphoma Coalition,” she said.
Key Role of Support Groups
The IWMF has 65 support groups (http://www.iwmf.com/services/support-groups.aspx) in the USA, seven in the various territories and a sister organisation in Canada, and 13 in other parts of the world. However, there is always room for more support groups.
“I’ve always got my eye out to find people, especially in areas that are remote or where we don’t already have a support group set up,” said Sara.
Anyone who is willing to run a support group is contacted by the IWMF Support Group Facilitator. Once the green light is given, that individual is considered to be sanctioned by the IWMF.
“We give our support group leaders a handbook that contains helpful hints and directives on such issues as to where to have your first meeting, how to set it up and so on,” she said. A copy of the handbook can be found in the members section of the LC site.
In addition to providing the handbook, the IWMF also holds a one-day workshop for support group leaders. This workshop takes place the day before the IWMF’s annual Educational Forum.
“This workshop provides group leaders with an opportunity to compare notes, share ideas and learn how to perform some of the required functions,” she said.
One of the requirements of a support group leader is list management.
“A crazy administrative thing like list management is sometimes a challenge for volunteer group leaders and that is a lot to ask a volunteer to do,” Sara said.
The IWMF tries to make it as easy as possible through the provision of the handbook, clerical support from the IWMF Business Office and spending time on this topic at the workshop.
How often a group meets depends on the location and size of the group and the support group leader.
“In Idaho, there is a group of five that gets together for a summer barbecue every year and that’s the only time they meet, while the New York City group, with between 300 and 400 potential attendees, meets every three months,” she said.
IWMF-Talk is an interactive online email discussion list where all matters regarding WM are discussed among patients and caregivers.
“It’s a really great way for people to get input from others with WM quickly, particularly about side effects, treatment and complementary or alternative therapies” said Sara.
Participants come from around the world and include physicians who treat patients with WM. Sara estimates 2,000 people participate in the internet discussion list, which is moderated by one of the IWMF Trustees who also has WM.
Annual Educational Forum
The IWMF’s 2014 annual Educational Forum, held in May in Tampa, Florida, was a great success with nearly 300 people attending, including nine exhibitors and 15 speakers.
“The highlight was a breakout session on ibrutinib. We had to get more chairs in the room as more than 120 people wanted to attend the session,” Sara said. Ibrutinib is currently being studied in a phase II trial in patients with WM. To view the presentations as well as videos presented at this year’s Forum click here.
While the majority of attendees to the 2014 Educational Forum were from the USA, attendees also came from Canada, India, Israel, Australia, France and the UK.
Over the years, the number of newly diagnosed patients attending the Forum has increased.
“People who have just found out they have WM find the idea of networking with others in the same situation very supportive,” she said.
Other attendees come because they want to find out what’s new from the previous year or they want to reconnect with those they met previously.
As part of the registration package, attendees receive a list of everyone attending the Forum, including their phone number and email address. When registering for the Forum, attendees are asked whether their contact information can be shared.
“Everybody appreciates this list. They refer to it and maybe get in touch over the year with some of the people they met,” she said.
Finding Out About IWMF
IWMF tries to promote awareness about its services through its members, support group leaders and other volunteers who place IWMF literature in local cancer centres and in their own doctors’ offices. The internet has also helped with the spread of information relating to WM as newly diagnosed patients can request to receive an information package from the IWMF.
“Until about three years ago, we sent out between 40 and 60 information packages each month. Now we send out between 80 and 100,” Sara said. IWMF’s publications can also be downloaded from the IWMF website (http://www.iwmf.com/publications/).
Challenges Facing Patients with WM
The biggest challenge confronting patients with WM is deciding what treatment will be best for them.
“Getting involved or having the ability to get involved in a clinical trial or being fortunate enough to see the right doctor who specialises in WM and prescribes the right line of treatment are huge issues for patients,” said Sara.
Clinical trials for WM are few and far between and, as Sara notes, not everyone can miss work and take time off to travel to where the clinical trial is being conducted.
Because WM is so rare, sometimes finding a doctor who is knowledgeable about WM and has treated other patients can be a challenge. In that situation, the IWMF suggests getting a consultation or second opinion from a doctor who specialises in WM. To assist, the IWMF has created a directory of doctors worldwide who are specialised in WM and can provide consultations to patients and/or other physicians. This directory can be found at the IWMF web site. (http://www.iwmf.com/about-wm/finding-a-doctor.aspx)
Grateful thanks to the IWMF for all their efforts to support those with this rare form of lymphoma.
August 25, 2014