Advocacy

The CCAC shares its stories of survival to encourage hope for a better future

The CCAC shares its stories of survival to encourage hope for a better future

barryBarry Stein – CCAC Founder & CEO
Diagnosed with stage IV metastatic colon cancer in 1995

‘Upon my diagnosis I knew very little, if anything, about cancer except that I had to fight. I wanted to do everything possible to improve my situation, but I had no experience and I understood very little of the information given to me. I vowed to do as much research as I could so that I would be able to make informed decisions about my treatment.

My determination proved to be a very important first step in my cancer journey and as a survivor. I now know that colorectal cancer is preventable, treatable and beatable. That’s why I have devoted my life since 1995 to making others aware of the disease, supporting patients and their families and working hard across Canada both for the implementation of screening programs, as well as equal and timely access to effective treatments to improve patient outcomes.’

Over 20 years ago Barry Stein’s vision to create a better, more preventive and equally accessible medical environment for all Canadians touched by colorectal cancer was put into motion with the birth of the Colorectal Cancer Association of Canada (CCAC). His mission was threefold: Awareness, Advocacy and Education, the three pillars needed to implement change for a cancer free future.

As part of their programs, the CCAC developed numerous monthly support groups across the country to create a meeting place for patients, their families and caregivers to talk about their individual situations and exchange ideas of how to help each other through not only their struggles but their successes as well. The CCAC’s dedicated cancer coaches furnish attendees with valuable information by sharing up to date information about the most current therapies designed to help them. Participants have said they come away from the meetings empowered with vital knowledge each time. Here are a few stories of people the CCAC has helped over the years:

Elan Freedy
Diagnosed with Stage IIIB Rectal Cancer

Elan felt in perfect health before his annual checkup and a rectal exam to check his prostate found microscopic traces of blood. Both his GP and GI told him it was probably nothing based on his young age but recommended a colonoscopy just in case.
“The day of the diagnosis still seems likes a dream in my memory. I remember feeling like it can’t be real.

I was lucky to have such a supportive and loving family and wife who took amazing care of me through all stages of my treatment. I also feel lucky to have made some amazing friends who are my peers in this journey and have greatly enriched my life. I think everyone who goes through the journey comes out stronger and with a better perspective on life than when they went into it.”

UntitledFrank Formusa
Diagnosed with Stage IV Colon Cancer

Frank Formusa began his journey with cancer at 66.

In the fall of 2012, his Oncologist suggested that he may be a candidate for a Hepatic Arterial Infusion Pump – a procedure unavailable in Canada during that time. He wrote to various Provincial and Federal agencies to advocate for the procedure to be done in Canada. In doing so, he met Barry Stein who shared his own successful personal journey with colon cancer and introduced him to Filomena Servidio-Italiano – leader of one of the CCAC support groups.

“This is not a disease that one should go through by themselves. To go to the CCAC meetings is to have a safe place for patients and their families to be really listened to and appreciated. We have left every meeting feeling more informed and with a more positive outlook.

Thank you CCAC – Thank you Filomena! I am so grateful to have met you and to know that you are there for us and for so many just like us.”

jamie 1Jamie Mead
Diagnosed Stage IV Colon Cancer two weeks shy of her 28th birthday

Her diagnosis stemmed from acid reflex complaints at a walk in clinic.

“I have had my surgeon admit that he never thought he would see me again after our first meeting. But with determination, a positive attitude and the will to keep on living – I have proved everyone wrong. I know this is not the end of my battle against colon cancer. I will be fighting this for the rest of my life, but that is ok. I am not thankful for cancer – that would be crazy – I am thankful for other things it has given me. I have a greater appreciation for all those who surround my life. It has made me into a person I didn’t know existed.”

IMG_0289Linda Wilkins
Diagnosed with Stage IV Colorectal Cancer in August 2005

 
After her surgery to remove the primary tumour along with about 75 percent of her colon, followed by a full round of chemotherapy, Linda was introduced to the CCAC and its support groups.

“It is now seven years later and I am still ‘No Evidence of Disease’.  Perhaps I am the exception, but I learned that the most important lesson here is to be your own advocate and I pass it along to anyone who will listen, thanks to the CCAC and the invaluable support they offered through CCRAN (CCAC support groups). I OWE THEM MY LIFE.

UntitledMarie Taurasi
Diagnosed Stage III rectal Cancer in January 2015

When Marie was diagnosed she had very few symptoms. But following a colonoscopy her world and that of her husband and two children (ages 13 and 17) came crashing down.
“Throughout this journey, with the education, support and guidance of the CCAC, I have learned a lot about this disease. Most importantly, I learned this is not just an old person’s disease! This disease affects men and women of all ages. It does not discriminate.

The CCAC is here for people like you and me. People who desperately require support, guidance and above all education, so that we can get through the ups and downs that we go through when battling this horrible disease.

I am so fortunate that I started my journey with the CCAC because without their help I would not be “cancer-free today”! What a gift they gave to me and to my precious children and husband! Thank you CCAC, for all the support and guidance you have given us. You truly are “Angels!”

197Werner Muehlemann
Diagnosed with Stage IV Colorectal Cancer at 28

When Werner went to see his doctor about some problems he was having he was told that he had nothing to worry about because he was young and in good shape. Following a few tests he was diagnosed with colorectal cancer.

“In that moment, I saw my life flash before my eyes – my career and dreams of getting married and starting a family vanishing.

The CCAC helped me acquire all the information that I needed to understand my treatments to follow in the months ahead and ultimately beat colorectal cancer. The CCAC also helped my family get the information they needed to support me in my long journey.

My dream for the future is that colorectal cancer screening becomes as routine as going to the dentist.”

Never Too Young for Colorectal Cancer

Never Too Young for Colorectal Cancer

NTY Coalition_final logo Colorectal cancer no longer discriminates on age. While colorectal cancer incidences and mortality rates in Canadians aged 50+ have been declining in recent years due to increased screening and surveillance programs, the opposite is unfortunately being reported for our younger population.

In the last few years, Canadian doctors have observed a rapid increase in the number of patients under age 50 with colorectal cancer. What makes it even more concerning is that they cannot explain why.

The study also found that younger patients are getting diagnoses at later stages making them harder to treat and leading to increasing fatalities. These shocking statistics reveal that there is more work to be done in terms of prevention and treatment of colorectal cancer in Canada – especially for young adults.


In the last year, the CCAC has partnered with the Never Too Young (“N2Y”) Coalition, an organization united to take action on young onset of colorectal cancer through action, education, and research. The Coalition includes medical professionals, patient advocacy organizations, cancer survivors and caregivers working to educate the public about this growing issue and to reduce the number of late stage young-onset colorectal cancer cases.

Together with the N2Y coalition, the CCAC provides support and information to young patients in Canada who have experienced early onset of the disease.

Young patients may not always understand the signs and symptoms of colorectal cancer, which may delay their seeking medical attention. Symptoms of CRC can vary from blood in the stool, abdominal discomfort, constipation and much more.

According to the Canadian Cancer Society, men are more at risk than women for the disease. Eating processed and red meats, a lack of dietary fiber, a lack of physical exercise, obesity, alcohol, smoking, diabetes and genetics are also identified as risk factors.

Younger patients should consider the following when speaking to their doctors about their inherited risk or symptoms for colorectal cancer:

Family Tree

About 10% of the population has a first degree relative with colon or rectal cancer. If it is evident in your family tree, it is recommended to start screening as early as the age of 25.

Lynch Syndrome

Changes in certain genes increase your risk of colon cancer.
Lynch Syndrome is the most common type of inherited colon cancer, accounting for about 2% of all colon cancer cases. Lynch syndrome is a mutation of a gene that is responsible for fixing errors in your DNA. Lynch Syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), is an hereditary disorder caused by a genetic mutation in which affected individuals have a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers, often at a young age. To prevent colorectal cancer, people with Lynch Syndrome should undergo a colonoscopy every 1-2 years, starting in their twenties. Doing this will reduce the risk of colorectal cancer by 77%.

References:
http://www.ctvnews.ca/health/rapid-increase-in-colorectal-cancers-among-young-canadians-study-finds-1.2919527

The Backbone of the CCAC is its Supporters

The Backbone of the CCAC is its Supporters

action-changes-things The CCAC is dedicated to colorectal cancer awareness and education, supporting patients and their families, and advocating on their behalf. Like most non-profit organizations, we rely on donations and money collected from fundraising events to maintain the services and programs we offer. As a result, throughout the year we host numerous campaigns and events to ensure we maintain our promise of working towards change for a better colorectal cancer free future.

As always, we invite our many supporters to participate either by attending or sponsoring our events and campaigns which include, Dress in Blue Day, Scotiabank Marathons, our annual Gala in Montreal, Foods That Fight Cancer, Never Too Young and Decembeard, to name a few.

However, in addition, we are very lucky and thankful to have numerous supporters across the country that host their own fundraising events in honor of a loved one affected by colorectal cancer. These individuals not only have our support via promotional or educational materials required but also have access to local staff or volunteers available to ensure their event’s success. Previous volunteer hosted events include; golf/baseball tournaments, luncheons, dinners, concerts, fashion shows, movie nights, art exhibitions and auctions.

Should you be interested in joining our volunteer staff or hosting a local event of your own, please do not hesitate to contact Frank Pitman at frankp@colorectal-cancer.ca.

Upcoming Fundraising CCAC events:

Dress in Blue
Dress in Blue Day happens annually on the first Friday of March to celebrate Colorectal Cancer Awareness Month; activities go on all month long. On this day, we engage schools, businesses, community groups and individuals to help us call attention to colorectal cancer awareness and spread lifesaving knowledge on prevention.

You can engage by hosting denim days and blue costume contests at offices and schools, holding local fundraising events, getting involved on social media and so much more. To be part of Dress in Blue Day and for any further information go to dressinblue.ca. We would love to see a colorectal cancer free world, please be part of the success by showing support!

Raise awareness for Colorectal Cancer

Raise awareness for Colorectal Cancer

Survivor The whole month of March is dedicated to Colorectal Cancer Awareness. The month where the Colorectal Cancer Association of Canada strives to raise awareness about the importance of screening and offers support to those touched by the disease.

Colorectal cancer is the second leading cause of cancer related deaths in Canada, yet it can be detected through simple screening tests. Colorectal cancer affects everyone, young and old, male or female. Although the prevalence of the disease increases at about 50 years old, many young individuals are touched by the disease, and the CCAC makes a point in offering them support.

The CCAC’s mission is Awareness, Education, Support and Advocacy. They continue to develop new events and programs across the country, with the goal of having a strong voice in every Canadian city.

This month, is also Nutrition month which ties in perfectly with the Foods That Fight Cancer program, a program that aims to celebrate a healthy lifestyle and primary prevention of cancer. We have also aligned with our alliance partners all over the world to promote the Never Too Young (N2Y) campaign supporting young patients diagnosed with the disease.

To beat this disease, we need the world to know how it can lower its risks through healthy lifestyles and screening.

We are in this fight together and will one day be able to proudly say that we beat this disease together!

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March Colorectal Cancer Awareness Month

March Awareness_FB TW BANNER (1)This March, join Canadians across the country to honor all those affected by colorectal cancer during Colorectal Cancer Awareness Month. Last year alone, an estimated 26,100 Canadians were diagnosed with colorectal cancer. One in 12 men and one in 14 women are expected to develop colorectal cancer during their lifetime.

Despite the fact that colorectal cancer is Preventable, Treatable, and Beatable, it remains the second leading cancer killer in our nation. It does not discriminate against sex nor age. In past generations it was a disease more commonly found in individuals 50 years and over. However, statistics now show that more young people are being diagnosed, particularly those with Lynch syndrome.

Awareness, education and prevention through timely screening and healthy lifestyles are key to survival. Consequently, the Colorectal Cancer Association of Canada (CCAC) programs and campaigns are designed with this goal in mind, particularly to our younger population through our Never Too Young (N2Y) campaign.

butt picOn March 3rd, you can help support the CCAC and our patients by organizing a “Dress in Blue” Day at your work place. By dressing in Blue and raising funds for important CCAC programs, you will be spreading awareness of the disease, supporting patients and their families. It’s a simple and fun way to help us help you! For more information and to register your workplace, see: http://ccac.donordrive.com/event/515.

During awareness month, we are also celebrating the success of our Foods That Fight Cancer (FTFC) program under the direction of Dr. Richard Béliveau. FTFC’s goal is to help Canadians make the right food choices that will not only help prevent cancer, but also increase the chances of survival.
By supporting the CCAC, not only are you becoming part of the fight against cancer, you are helping to develop important programs and support for patients across the country who struggle to meet the challenges of this disease. “Patients now have more options to treat this disease than ever before. New treatments may completely change the manner in which we treat this disease. I am more optimistic than ever before that we can prolong lives longer and ultimately find a cure”, said Barry D. Stein, president of the CCAC.

We need your help to get the word out to save a life! Please donate to help us help you!
Together we can make a difference!

Visit our website or follow us on social media for a full list of our upcoming March Awareness Month events.

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Foods That Fight Cancer

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BUM RUN FUN-DRAISING FOR A GOOD CAUSE

unnamed (1) On Sunday April 30th at 7:30 AM, at Queen’s Park Circle in Toronto, Balanse Bum Run will host its 6th annual fundraising event to benefit colorectal cancer associations across Canada (including the CCAC) in support of their fight against Canada’s second leading cancer killer.
Bums of all ages and fitness levels are invited to partake as part of a team or fly solo by lacing up to walk/run to raise awareness and education of colorectal cancer. Little Bums can register for a shorter 1 km walk/run starting at 7:40am. The Little Bums race is a free event for children under 12 years of age.

If you live in the area, please join us! There will be food, prizes, music, press, CCAC’s ever-growing popular 40-foot long by 8-foot high, pink inflatable walk-through Giant Colon, and so much more!

“BUM RUN is an awesome event. My family and I have been participating for the past 2 years and we plan to participate again this year to raise funds for the wonderful CCAC and to spread the word that colorectal cancer is preventable through screening. I don’t want anyone to go through what I went through when I was diagnosed with stage III rectal cancer. So spread the word: BUM RUN is back! Sunday, April 30th.” Marie Taurasi who is a stage III rectal cancer survivor

As the CCAC will be one of 6 charities to benefit from the proceeds raised at the event we are calling on you to assist in one of two ways:

1. Participate in the event by walking/running: You can register for the event, set up your very own fundraising page furnished by “Running Room” and then have donations pour in! Simply click here to register:

OR…

2. Support the cause by donating to one of our team members fundraising page. Here is the link to her fundraising page:

All proceeds will go to the CCAC’s patient support and educational programs. Tax receipts will be instantly generated and online donations are secure.

BUM RUN HISTORY

The Bum Run is a not for profit organization founded by Dr. Ian Bookman, a gastroenterologist in Toronto, with the goal of raising awareness about colorectal cancer screening to prevent the 95% of cancer deaths which still needlessly occur.

Its mission is to increase awareness of the commonality of colorectal cancer today and to increase participation in screening programs to prevent colorectal cancer. In doing so, each year the event selects a list of charities to support in their fundraising initiatives. The charities have been selected based on their performance record in saving lives through promoting easy access to screening and proposal of use of the funds raised.

REAL MEN, REAL BEARDS, REAL CHANGE!

REAL MEN, REAL BEARDS, REAL CHANGE!

This December thousands of men around the world banned together under one mission: to lay down their razors to grow out their best beard. No, they weren’t just slacking off on shaving for a month – instead their goal was to raise awareness and funds for the fight against colorectal cancer by participating in Decembeard. The result, a tapestry of beards ranging from peach fuzz to the kind you’d find on a stereotype lumberjack. AND $7,090 raised for the Colorectal Cancer Association of Canada.

This was the CCAC’s third year participating in Decembeard and both REAL MEN and REAL WOMEN were encouraged to participate by getting sponsors to support their beard growth – for women by faking, making, or painting a beard.

Colorectal cancer is the second biggest cancer killer for men and women combined in Canada, and yet it is 90% preventable and curable if caught in its early stages. In 2014, 1 in 13 men and 1 in 16 women will be diagnosed with colorectal cancer. This amounts to approximately 24,400 (about 13,500 men and 10,800 women) new cases of colorectal cancer each year. That’s why awareness is so important.

The funds we raised with all those who participated and our sponsor; Big City Beards, (for every sale they made during December they donated $1 to the CCAC and advocated for the campaign) will continue to help and support people with colorectal cancer and their families, and raise awareness of the disease, its symptoms, the need for early diagnosis and promote screening in Canada.

beard“Decembeard is a great charity for the lazy man! What can be easier than stopping to shave for a month!? Aside from the constant reminders from my wife to stop twisting/scratching/combing my patchy beard it is an easy way for me to raise awareness for a disease that has affected my family immensely.

When people see me with my patchy beard they often ask what’s going on and it is a great way to start the conversation about colorectal cancer and how easily it can be prevented. I look forward to many more years of not shaving in December!” Robert Stein

About Big City Beards

Health is our main priority and we believe in strengthening our bodies, skin and hair with only the best natural and organic products available, and that’s why we brought it upon ourselves to create the healthiest, most nurturing beard care product line on the market!

We believe in challenging the industry norms by handcrafting (USDA organic certified, International Organic Certified, Vegan Certified, Kosher Certified) products that will be extremely beneficial for all of our bearded friends. They will soothe the beards of our users, with natural ingredients that have been used for hundreds of years by our forefathers, stretched across the globe. These organic and effective treatments are going to keep your skin nourished and moisturized, leaving you with the softest, healthiest beard one could ever ask for.

Together we can conquer cancer!

Together we can conquer cancer!

February 4th is World Cancer Day

World Cancer Day is an annual global event taking place every year on 4 February that unites the world’s population in the fight against cancer. Its goal is to save millions of preventable deaths each year.

On this day and throughout the month of February, the month of love, hundreds of cities and organizations around the world link together as one under the sole purpose of raising awareness and education about the disease and pressing governments to take action.

The theme for Cancer Day this year until 2018 is “We Can, I Can,” highlighting how everyone – as a collective or as individuals – can do their part to reduce the global burden of cancer.
Currently, 8.2 million people die from cancer worldwide every year, out of which, 4 million people die prematurely (aged 30 to 69 years).

World Cancer Day is the ideal opportunity to spread the word and raise the profile of cancer in people’s minds.
We encourage you to visit the World Cancer Day website and check out the local events in your area.

#WorldCancerDay #WeCanICan

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Launch of the Get Personal Campaign on World Metastatic Colorectal Cancer Day

Launch of the Get Personal Campaign on World Metastatic Colorectal Cancer Day

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Today is World Metastatic Colorectal Cancer Day. A day dedicated to raise awareness of the most advanced form of colorectal cancer, known as metastatic colorectal cancer; this is when the cancer has spread to other parts of the body, such as the liver or lungs.

Each year there are 1.4 million new cases and 694,000 deaths from colorectal cancer. Many of these deaths are caused because the disease is detected too late. Approximately 20% of people across Europe and the US are diagnosed when the cancer has spread and even more go on to develop metastatic colorectal cancer after having been diagnosed at an earlier stage. Regardless of where you live in the world, people diagnosed with metastatic colorectal cancer have no more than a 1 in 10 chance of surviving more than five years.

However, with timely access to effective treatment and high quality care, people with metastatic disease can see their survival chances and their quality of life dramatically improve. But for too many patients, access to treatment is dependent on whether they have adequate insurance or if their public health system has approved specific treatments, rather than what their doctors and healthcare providers believe would benefit them most.

To coincide with this important day, Bowel Cancer UK, Bowel Cancer Australia, Colon Cancer Alliance (US), Colorectal Cancer Association of Canada, and Fondation A.R.CA.D. (France), have come together to launch the global Get Personal Campaign to make real change happen for people with advanced colorectal cancer.

Get Personal aims to increase survival rates, improve quality of life and reduce variation in access to best treatment and care for people living with metastatic colorectal cancer around the world.

We are committed to:

• Eliminating variation between and within countries so that everyone, irrespective of where they live, has access to the best treatment and care.
• Putting metastatic colorectal cancer firmly on the agenda of governments, health care providers and key decision-makers.
• Campaigning for further research to address gaps in knowledge and support the development of new, innovative and effective treatments.
• Raising awareness among patients, clinicians and policy-makers of the full range of tests and treatments to be made available.

By campaigning together and learning from each other, we know we can make a difference. Colorectal cancer does not recognise borders, and neither do we
For more information on the campaign and to find out how to take part visit the Get Personal website www.getpersonal.global.

Survivor Story: One Patient Questions & Demands Change – You can too!

Survivor Story: One Patient Questions & Demands Change – You can too!

pic My name is Joan Green. I am 62 years old, married, mother of 3 and I was diagnosed with stage IV colorectal cancer in 2013. My disease spread to my liver and lungs which necessitated me going on chemotherapy and a targeted therapy called Avastin. I have been responding very well to this combination therapy for quite some time. My quality of life has actually been good and I have managed to lead a relatively normal lifestyle. The majority of tumours have shrunk and I am grateful to be alive especially with the support of the Colorectal Cancer Association of Canada through their monthly support and information meetings which are amazing and helpful to us all. I really appreciate these monthly meetings.

I have recently been advised though by my medical oncologist that my liver enzymes are taking a beating because of the toxicity caused from the chemotherapy. The oncologist is, therefore, recommending I change chemotherapy regimen. If I do this, I will no longer be eligible for the avastin which I believe has made a difference in the management of my disease. The provincial plan where I live does not fund avastin therapy in the next line of therapy for me. This is so disappointing for me and for my family who rely entirely on universal health care coverage! I truly believe that Avastin is the drug that is keeping my cancer at bay. I am not certain how to proceed. I know that other countries fund avastin in multiple lines of therapy. Why not in Canada?

Do you want to partake in a movement for change?

action-changes-thingsIf so, the CCAC needs your help! We’ve teamed up with patient advocacy groups from around the world to improve the treatment and care of patients affected by advanced colorectal cancer. Advanced colorectal cancer or metastatic colorectal cancer is when the cancer has spread from the colon or rectum to another part of the body such as the liver or lungs, or anywhere else for that matter. We are carrying out a comprehensive survey on the experiences of advanced colorectal cancer patients to learn about excellent practice and gain an understanding of where improvements need to be made.

Act now and promote change! Take the survey here:

http://confirmit.ssisurveys.com/wix/p65578404.aspx?l=4105