CML Advocates Network

Contact address:

292 Palmer Street Apt C-1
Costa Mesa
Calif 92627
United States

Telephone: +17143193193

Website: https://www.cmlbf.org
Email: fsg@cmlbf.org

Facebook: https://www.facebook.com/CMLBF.org
Twitter: https://twitter.com/CMLBF_ORG
LinkedIn: https://www.linkedin.com/company/CMLBF
Instagram: https://www.instagram.com/cmlbusterfoundation/

Key contacts:

Joan W Clements - CEO/ VP Mission
Email: joan.clements@cmlbf.org
Phone: +17143193193

Gail M Sperling - Dir FSG Development
Email: gail.sperling@cmlbf.org
Phone: +18184265115

Brief description of organization:

CML Busters’ Family Support Groups are dedicated to assisting US CML patients, their families, and caregivers to improve the quality of life through their journeys with Support, Empowerment, and Hope.

Audience/Constituency:

Support groups (380 members US). Online groups (thousands - Global). - Jan 2021
TARGET: The underserved US CML population (120,000+) and their caregivers and families (450,000+).

Ways of communication with constituency:

Face-to-face and virtual support groups meeting (monthly, website, social media groups, social media platforms (FB, Twitter, Instagram, LinkedIn, YouTube), conferences, webinars, newsletter, emails, telephone, teleconferences, special events, meet-the-experts’ events, mailed updates, messenger updates, video messenger updates.

Organizational objectives and key programs:

Our organizational objectives are:

• Empower CML warriors, their families, and caregivers.
• Provide emotional support through the human connection via face-to-face and virtual monthly peer-to-peer discussions and first contact mentorship.
• Sharing personal experiences, acquired knowledge while living with CML, and providing mutual support are cornerstones of this program.
• Provide links to current, curated, and reliable CML information through social media outreach and access to the US CML population.
• Provide empowerment opportunities for Patient Leaders and Members through participation in: a.Blood cancer conferences (internationally and nationally). b.CML related patient surveys, advisory groups, and advocacy opportunities to represent the CML patient’s voice. c.Lectures, webinars and CML updates such as ASH, ASCO, ESH, CMLHZ, etc.

Our key programs are:

• US Peer-to-peer Support Groups;
• First contact new patient engagement;
• Key events: World CML Day (9-22), Caregiver Appreciation Day (FEB), Holiday Celebration of Life (Dec);
• FSG Leadership Training updates;
• Fund the Cure for CML fundraisers (giving back empowerment).

Board of Directors:

6

Year of establishment:

2013

Year of becoming a CML Member:

2016

Members:

250+

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
Lucy.DiCarlo@lls.org

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)

CONTACT INFORMATION:

67 Shoreham Avenue Ottawa, Ontario
Canada

Telephone of organisation: +1-613-726-1117
Fax of organisation: +1-613-282-4801
E-Mail: zmiller@sympatico.ca

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)