For immediate release: Ottawa advocacy group to host rare-disease patient portrait exhibit at Shenkman Arts Centre

OTTAWA – February 13, 2020  – The Acromegaly Ottawa Awareness & Support Network (AOASN) is hosting a photography exhibit called “Light of Day” on Tuesday, March 3rd , 7:00 p.m. to 9:00 p.m. at the Shenkman Arts Centre in Orleans. The inspiring portraits shine light on how patients of the rare disease acromegaly experience and overcome a condition of which most people are unaware.

Media and the public are invited to attend this vernissage event, free of charge, to meet and speak with patients and AOASN members, as well as the Montréal-based photographer behind the project Santino Matrundola.

The AOASN hopes the exhibit, running March 3 to 22, will raise awareness and understanding of this disease and reach patients who may be suffering in isolation.

What is acromegaly?

Acromegaly is a rare, serious condition most commonly caused by a non-cancerous tumour on the pituitary gland which causes it to over-produce growth hormone. This results in symptoms like the enlargement of internal organs, hands, feet, and jaw, and other conditions like diabetes.

About the Acromegaly Ottawa Awareness & Support Network

The AOASN is a registered non-profit organization that promotes awareness about this rare, life-changing diagnosis, unites patients and their families, as well as advocates for patients’ rights and swift diagnosis. It was founded in 2018 by Ottawa resident Dianne Sauvé, an acromegaly patient herself, after realizing that local resources for this disease were almost non-existent.

The group’s main objective is to foster camaraderie and support among Acromegaly patients and those who support them, and raise public awareness of Acromegaly through education and advocacy.

Since its founding in 2018, the AOASN’s Facebook group has grown to 65 members, many of whom had never met another person with the same diagnosis. In the closed group, patients and their friends and families can discuss their experiences and share information and resources. The public Facebook page promotes their advocacy activities, events, and news, and can be followed by anyone.
Media contact

Angie Sauvé

angie@quirkcomms.com

613-868-8299

Patients Matter – Dianne Sauvé

dianne

Pfizer Canada recently invited Dianne Sauvé to participate in a video project that explored the experiences and perspectives of individuals struggling with medical issues. She discussed her journey with acromegaly, the challenges involved with a rare disease diagnosis, and the advocacy work of the Acromegaly Ottawa Awareness & Support Network.

For immediate release: Ottawa group advocates for awareness of rare disease, acromegaly

OTTAWA – October 28, 2019 – November 1st is recognized internationally as World Acromegaly Day, and the Acromegaly Ottawa Awareness & Support Network (AOASN) is out to spread the word. The AOASN is a registered non-profit organization that promotes awareness about this rare, life-changing diagnosis, unites patients and their families, as well as advocates for patients’ rights and swift diagnosis.

What is acromegaly?
Acromegaly is a rare, serious condition most commonly caused by a non-cancerous tumour on the pituitary gland. The tumour causes the gland to over-produce growth hormone, resulting in symptoms such as enlargement of internal organs, hands, feet, and jaw, and other conditions like diabetes. There are approximately 2,000 diagnosed cases of acromegaly in Canada, with the possibility of many more suffering without a name for their illness.

About the Acromegaly Ottawa Awareness & Support Network
The AOASN was founded in 2018 by Ottawa resident Dianne Sauvé, an acromegaly patient herself, after realizing that local resources for this disease were almost non-existent.

“Those in Ottawa diagnosed with cancer or diabetes have support groups and a plethora of resources at their fingertips to get them through a scary and difficult time,” says Sauvé. “Most physicians never encounter a case of acromegaly and patient resources are extremely limited. One goal of Acromegaly Ottawa is to help those who feel isolated with this rare condition.”

One of the main objectives of the AOASN is to educate the medical community in Ottawa about acromegaly. The average time to reach a diagnosis is seven to ten years. This is due to several factors such as limited coverage of acromegaly in medical school, and the disease’s wide-ranging symptoms affecting many bodily systems, often ascribed to more common conditions. A fast, simple, and affordable blood test (IGF-1) can help confirm a diagnosis of acromegaly.

Since its founding in 2018, the AOASN’s Facebook group has grown to more than 60 members, many of whom had never met another person with the same diagnosis. In the closed group, patients and their friends and families can discuss their experiences and share information and resources. The public Facebook page promotes their advocacy activities, events, and news, and can be followed by anyone.

The group hosts quarterly in-person meetings and social gatherings, and outreach activities at local venues. Coming in March 2020, the AOASN will host an exhibit at the Shenkman Arts Centre in Orleans, by group member and photographer Santino Matrundola. The exhibit, called “Light of Day,” features portraits of acromegaly patients and explores the patient perspective and experience. Media are invited to attend. RSVP HERE.

Dianne Sauvé and other board members of the AOASN are available for interviews in-person or by phone.

Helpful links:

 


Media contact

Angie Sauvé
angie@quirkcomms.com
613-868-8299