Acro-Connect Meet-Ups Offering Community, Support, and Advice

Published on by Acromegaly OttawaLeave a comment

A rare disease can be isolating. It’s difficult to find others to talk to who truly understand the shock of diagnosis, the lack of awareness, the impact of symptoms, and the confusion over treatment.

Having a trustworthy group of individuals who can not only sympathize, but provide guidance, back up fears, answer questions, and validate experiences with a “I thought it was just me!” can make a world of difference. It offers those with rare diseases a sense of belonging and confidence. From the newly diagnosed to those who’ve experienced years managing the disease, it can lead to valuable insights or further questions to raise with medical professionals.

It’s with this sense of fostering community that the Acromegaly Ottawa Awareness and Support Network launched Acro-Connect. This series of guided discussions is becoming a lifeline for acromegaly patients not only in the Ottawa area but even further afield.

Held virtually for the time being to keep members safe from COVID, the sessions focus on a theme. A member of the Acromegaly Ottawa group or a professional related to the topic leads the group through a series of open questions, allowing everyone a chance to share their experiences and thoughts. It’s a warm, welcoming, and much needed way to feel understood and learn from others sharing the same journey.

The next session will be on mindfulness on September 1, 2020, at 7:30pm Eastern Time. Email acromegalyottawa@gmail.com for details and a link to join the group.

Future sessions are planned for the coming months—contact Acromegaly Ottawa for more information or follow the Facebook page for updates.

A Vernissage to Remember

Published on by AngieLeave a comment

Acromegaly Ottawa Awareness & Support Network is pleased to report that this past Tuesday, March 3, we hosted a successful opening night of Santino Matrundola’s Light of Day photo exhibit at the Shenkman Arts Centre in Orleans. The exhibit features 16 acromegaly patient portraits. The vernissage was well attended by the public and included local MP Madame Marie-France Lalonde and Ottawa City Councillor Matthew Luloff.  Guest speaker Dr. Dora Liu, Endocrinologist, informed the group of how the Ottawa Hospital Endocrinology Department has changed as it relates to providing improved services for patients.

President, Dianne Sauvé spoke about the group’s formation and how it has grown since its inception in May 2018 to its current size of 67 members today. The exhibit is only one of many activities planned by the group to build awareness for acromegaly and provide support to its members.

The exhibit received an overwhelmingly positive response from attendees on opening night and we encourage the public to visit as it remains on display until March 22, 2020.

 

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

Published on by AngieLeave a comment

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