USA: CML Busters Family Support Group of California

CONTACT INFORMATION:

c/o Joannie Clements
292 Palmer Street, Apt C1
Costa Mesa, CA 92627
USA

Tel. +1 (714) 319 3193

Web: https://www.facebook.com/cml.busters
E-Mail:

KEY CONTACT:

Joannie Clements, CML Patient – Co-founder / Primary Contact / Advocate
Gail Goodell Munzing MBA, RN, OCN  – Group Co-Facilitator
Jessica Kozuki MSN, AOCNP, NP-C, AOCNS – Group Co-Facilitator

BRIEF DESCRIPTION OF ORGANIZATION:

The CMLBUSTER-specific mission is to "battle CML on a daily basis, provide CML patients and their families with support, empowerment, hope and help and present a united front while advocating for a full and abundant life".

Founded in November 2003, the CML Busters began with eight CML Patients and their families and caregivers and have met consistently and expanded on a monthly basis since that time. Members attend from hundreds of miles away and recognize that this “CML peer-run hands-on” family support group unique for the region. Shared experiences, knowledge, expertise in living with CML and mutual support are cornerstones of this program. The CML patients represent all the current treatment protocols in the US (Gleevec, Sprycel, Tasigna, Bosulif, Ponatinib, Iclusig and stem cell transplant). Additionally, some members are exploring treatment-free remission trials.

The CML BUSTERS, a recognized independent CML specific family support group of the Leukemia and Lymphoma Society, adheres to the LLS mission of: curing (CML) and improving the quality of life of patients and their families.

KEY OBJECTIVES AND INITIATIVES:

Through these “hands-on” peer-to-peer monthly meetings, our objective is to advocate for the best possible treatments and care for CML patients and their families.

Specifically, this group:

  • Offers peer support through monthly face-to-face group meetings
  • Provides a unique support system especially for the newly-diagnosed, patients changing protocols and for those facing any challenge along the CML journey
  • Provide current and reliable information on CML treatment protocols including side effects and side effect management, dosage, access to treatment, local CML specialists, interacting with physicians and pharmacists, insurance, legal and employment issues
  • Provides positive role models for living successfully with CML
  • Advocate locally and nationally for access to care for all CML patients
  • Members have participated in:
    • Organization and participation in blood cancer conferences
    • CML related surveys
    • CML trials, First connection/new patient telephonic mentorship-internationally
    • Lectures and annual updates (such as ASH) to keep the group educated on the latest CML research and treatment options

MEMBERS:

130 (status: Feb 2016)

USA: The National CML Society

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Canada: The Leukemia & Lymphoma Society of Canada

CONTACT INFORMATION:

804-2 Lansing Square
Toronto, Ontario
M2J 4P8
Canada

Telephone: +1 (416) 661-9541
Fax: +1 (416) 661-7799
http://www.lls.org/canada

KEY CONTACT:

Lucy Di Carlo, National Manager - Patient Education and Support

BRIEF DESCRIPTION OF ORGANIZATION:

A non-profit organisation that raises funds to support patient services, research and education for Canadian patients, families and health professionals. Focused on blood cancers.

ORGANIZATIONAL OBJECTIVES:

  • Our four Canadian Chapters have a patient Services Manager, whose role is
  • assist patients, upon diagnosis, with essential information
  • hold regular patient/family support groups
  • link newly diagnosed patients with a survivor
  • present educational seminars
  • link patients with healthcare professionals, as needed

KEY INITIATIVES:

  • Fundraise to support our structure and programs
  • Review and fund best research grants in blood cancers in Canada
  • Patient service programs (as stated above)
  • Fund the new "Therapy Acceleration Program" in partnership with biotechnology sector and clinical trial sites
  • Support studentships for blood cancer research projects at Canadian medical schools

NUMBER OF MEMBERS:

250-300 (July 2008)

Canada: CML ZERO CLUB

CONTACT INFORMATION:

67 Shoreham Avenue Ottawa, Ontario
Canada

Telephone of organisation: +1-613-726-1117
Fax of organisation: +1-613-282-4801
E-Mail:

KEY CONTACT:

Zavie Miller Creator of the Zavie's Zero Club.

BRIEF DESCRIPTION OF ORGANIZATION:

A Zero Club number is assigned to each patient that reaches CCR in their CML treatment. I started assigning Zero Club numbers the day I took my first dose of STI571 (Gleevec) on March 29, 2001 as part of the expanded access trial at OHSU in Portland, Oregon. Six months later I became # 102 in my own Zero Club. I consider myself truly blessed.

KEY OBJECTIVES:

To assist CML patients with their journey on their CML trip. This includes locating a CML specialist in their area, pointing the patient to organizations that provide free medication for their CML, moderating an on-line chat on a weekly basis, reporting new discoveries to the on-line support groups, organizing patient meetings in Ottawa, Florida and other parts of the world that I travel to.

NUMBER OF PATIENTS IN THE ZERO CLUB:

1340 (July 2010)

Canada: CML Society of Canada

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Canada: The Canadian CML Network

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