Pursuing my calling

Ever since I can remember I have been of the mindset that I have been given Mucopolysaccharidosis (MPS) II Hunter Syndrome for a higher purpose. A gift in many ways. I know it sounds strange to call a genetic progressive (and extremely rare) disease a gift. But that is how I honestly feel. The life I have been given – the experiences, opportunities, people I have met, and friendships I have made (and continue to each and every day) is amazing. I know it’s the person that ultimately creates the life they want to live, but MPS II Hunter Syndrome is part of me. I don’t think I would have had the experiences and live this amazing life if I did not have this painful disease. Of course, MPS II Hunter Syndrome provides many struggles, but to be honest I think the good has outweighed the bad. I am not saying there haven’t been tough days – trust me I have had many and will continue to do so. For those who know me though I don’t live a life where my disease defines me, but rather I believe my disease is just part of me. I truly believe this [...] continue the story

Easing the Burden: Parkinson’s Disease | Part 2

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Easing the Burden: Parkinson’s Disease | Part 1

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Testicular Cancer

A documentary about personal struggle going through Testicular Cancer.

Ballsy Cancer Society is a universal hub of resources educating men and women on the signs and treatment of testicular cancer. The society works as a national, community-based charitable organization managed primarily by volunteers whose mission and purpose in life is to eradicate testicular cancer in men and improve the lives of those living with the disease.

Costello syndrome – Por qué?

Photo Essay By Anahita Nicoukar Avalos

A sunny day of March 2003, the word COSTELLO entered my life. This was the day a geneticist said: it’s likely that your son has Costello syndrome. He didn’t say a lot more, I didn’t ask anything and before I went back home he took a few pictures of my son. With a small digital camera and the flash in he took pictures of his face, close ups of his mouth, his nose, his hands, his neck, his feet. These pictures reminded me of the pictures you see in medical reviews to describe horrible diseases. My beautiful little boy whom I was so proud of his smile and black eyes, couldn’t possibly have a terrible disease…I couldn’t help thinking, if he wanted some pictures of him why didn’t he ask me ? I could have given him better ones where everyone could see what a nice baby he was.

Once at home I searched Costello syndrome on the web, I learned that “Costello syndrome is a genetic disorder that affects many parts of the body. This condition is characterized by delayed development and mental retardation, distinctive facial features, loose folds of extra skin (especially on the hands [...] continue the story

Advocacy 101

SMART

Enabling Excellent Patient Experiences: Creating Valued Support Services by Being SMART

Walter Rojenko, Corporate Director, Patient and Family Experience and Community Engagement, St. Joseph’s Health Centre, shares the S.M.A.R.T. framework that yields a Partner Experience Index. By implementing these five tactics, organizations can add value and continuously improve to meet the needs of their clinical departments by freeing up time to service patients and families.