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 address:

130 Inverness Plaza #307
Birmingham
Alabama 35242
United States

Phone: +18774312573

Website address: Http://www.nationalcmlsocociety.org
E-Mail: info@nationalcmlsociety.org

Facebook: facebook.com/thenationalcmlsociety
Twitter: @NCMLS or twitter.com/ncmls

Key contacts:

Greg Stephens - Founder/Executive Director
E-mail: gstephens@nationalcmlsociety.org

Jen Schwarz - Community Development Director
E-mail: jschwarz@nationalcmlsociety.org

Brief description of organization:

The National CML Society was created by and for patients and their families in order to provide a centralized hub of information for this rare form of leukemia.

Founded in 2007 as Carolyn's Hope, this organization quickly spread beyond the confines of a local work to address the real concerns faced by the CML community nationwide. In December 2009, the organization became The National CML Society (NCMLS), serving the needs of the CML community in the United States and its Territories.

The National CML Society is governed by a Board of Directors, a Medical Advisory Board, and a Patient/Caregiver Advisory Board. Together, these groups work to ensure the ongoing activities of the organization and that it adheres to its goals and objectives.

Audience/Constituency:

CML Patients, Carers & Family Members, Medical Professionals and other stakeholders.

Ways of communication with constituency:

Website, social media, phone, teleconference, video conferencing, Zoom, email, virtual and ground-based support groups, one-to-one support, events, conferences, and more.

Organizational objectives and key programs:

Our organizational objectives are:

• One on one support and guidance for the newly diagnosed
• Regional educational opportunities
• CML Specialist Directory
• Nationwide network of ground based support groups

Our key programs are:

• CML Connection
• One-to-One Support
• Assistance for Newly Diagnosed

Board of Directors:

5

Year of establishment:

2007

Year of becoming a CML Member:

2010

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)

Contact address:

103 Sussex Drive, Unit 13,
Beaconsfield, Quebec, H9W 6C7
Canada

Telephone: +5142395488

Website: Www.cmlsociety.org
Email: info@cmlsociety.org

Facebook: http://www.facebook.com/pages/The-CML-Society-of-Canada/374794626872
Twitter: @cmlsociety
LinkedIn: https://www.linkedin.com/company/the-cml-society-of-canada/?viewAsMember=true

Key contacts:

Cheryl-Anne Simoneau - President/Founder         
Email: Cheryl.simoneau@cmlsociety.org
Mobile: +48600221275

Brief description of organization:

Established in 2006, the CML (chronic myelogenous leukemia) Society of Canada provides support, education and information on CML, current and emerging treatments and research initiatives for people living with CML and their families. The mission of the CML Society is to help reduce suffering and improve care and the quality of life of CML patients.

• Treatment of CML has drastically extended survival with the advent of targeted tyrosine kinase inhibitors (TKI). The CML Society of Canada, acts as the eyes, ears and voice of its CML community, working to change the treatment paradigm as well as the course of this disease while supporting its constituents.
• The CML Society of Canada also supports organizations in their effort into finding a cure for CML.

Audience/Constituency:

CML Patients and their families.

Ways of communication with constituency:

Emails, Zoom, in-person events (in non-pandemic times)

Organizational objectives and key programs:

Our organizational objectives are:

• Canada has universal healthcare, but it does not include pharmaceuticals. Our main objective is to ensure that Canadians get access to the National Pharmacare program.
• Educate patients and non-patients about CMLs.

Our key programs are:

• Teaching patients how to advocate for themselves
• Teaching patients how to communicate with provincial and federal policymakers.

Board of Directors:

3

Year of establishment:

2006

Year of becoming a CML Member:

2017

Members:

3500

 

 

Contact address:

Carlaw avenue
669
Canada

Phone: +14165650504

Website address: https://cmlnetwork.ca/
E-Mail: info@cmlnetwork.ca

Facebook: https://www.facebook.com/thecanadiancmlnetwork/
Twitter: @CdnCMLnetwork

Key contacts:

Lisa Machado - Executive Director
E-mail: info@cmlnetwork.ca

Brief description of organization:

The Canadian CML Network is a patient group dedicated to the support of people living with Chronic Myelogenous Leukemia and those who care about them.

Ways of communication with constituency:

Newsletter, email, FB

Organizational objectives and key programs:

Our organizational objectives are:

• Patient and caregiver support
• Education
• Advocacy

Our key programs are:

• The Canadian CML Network is focused on creating a solid community for people living with CML, one through which they can access education, as well as emotional and social support.

Board of Directors:

7

Year of establishment:

2012

Year of becoming a CML Member:

2013

Members:

300