A new mesothelioma diagnosis brings a lot of uncertainty. One needs to first find the right doctor to determine the best course of treatment. Few hospitals treat a significant number of mesothelioma patients, so travel is likely, which means time off of work and finding a way to pay the bills. The whole experience seems overwhelming. Luckily, there are mesothelioma support groups to help support patients and families in their time of need.
Below are a few of the top advocacy groups for mesothelioma who not only assist patients and their caregivers but also raise awareness and funds for mesothelioma research.
Mesothelioma Applied Research Foundation
The Mesothelioma Applied Research Foundation is a nonprofit, charity organization dedicated to funding research for treatment of mesothelioma, advocating for federal funding and providing education and support for patients and families.
The Mesothelioma Applied Research Foundation provides resources for finding mesothelioma treatment, financial assistance and information about clinical trials. Resources for veterans and caregivers are also available.
They also provide education regarding asbestos and prevention. There are also opportunities to volunteer and fundraise for mesothelioma.
Canadian Mesothelioma Foundation
The Canadian Mesothelioma Foundation (CMF) is a charity that is dedicated to raising awareness about mesothelioma in Canada. CMF aims to foster a support network for patients and their families as well as supporting the development of a community of healthcare professionals that specialize in diagnosis and treatment of mesothelioma across Canada.
CMF provides resources regarding patient and caregiver support groups along with drug and financial assistance programs.
CMF also provides opportunities to donate or fundraise towards the cause and other ways to get involved.
Miles for Meso
Miles for Meso is a 5K race and fun run or walk that seeks to bring local communities together to raise awareness and funding for mesothelioma research. They believe that with continued outreach and mobilizing of resources, a cure is attainable.
Multiple races have taken place all over the U.S. including Virginia, Ohio, Pennsylvania, Washington, Florida, Illinois, Texas and Missouri.
To date, Miles for Meso has covered 20,000 miles and raised more than $400,000 for various mesothelioma and asbestos charities.
Visit Miles for Meso’s website to stay up to date on upcoming races and ways to get involved.
Asbestos Disease Awareness Organization
The Asbestos Disease Awareness Organization (ADAO) is the largest independent organization in the U.S. dedicated to those affected by asbestos.
The ADAO focuses on 3 main points: Education, advocacy and community.
ADAO aims to educate both the public and healthcare community about asbestos-related diseases and exposure prevention. They support research that leads to early detection and cure.
ADAO also collaborates with organizations around the world with the goal to ban asbestos worldwide. The ADAO is very vocal about the fact that asbestos is still legal and lethal in many places including the U.S. In fact, they have created a number of petitions to government officials around the world to ban asbestos.
ADAO also has a robust online community presence where those who have been affected by asbestos and mesothelioma can share their stories and support one another. There are significant followings on all channels of social media.
This organization also holds an Annual International Asbestos Awareness and Prevention Conference, most recently in April 2018 in Arlington, VA.
Visit their website to look out for future conferences and ways to get involved.
International Mesothelioma Program at Brigham & Women’s Hospital
The International Mesothelioma Program (IMP) is a specialized, team-based approach to mesothelioma treatment led by Director Dr. Raphael Bueno, a world-renowned mesothelioma specialist.
Through the IMP program, the patient is treated by a team of clinical and ancillary specialists to get personalized care to meet their unique needs. The team’s combined levels of experience have brought them together with the primary goal being providing quality of life extension to lead to a cure.
Patients will meet with a surgeon to determine the best course of treatment whether it be surgery, chemotherapy, radiation or a combination of modalities. Besides clinical care, social workers, chaplains and other staff provide emotional and spiritual support as well as practical help for patients and their families.
The IMP’s scientists are actively engaged in research, a genomic project and clinical trials.
Those looking for a personalized treatment plan and support as well as experience and clinical excellence should contact the IMP today.