Isabel Calderon, Vice President of Congenital Hyperinsulinism International, is planning a very energetic event for Rare Disease Day to be held on February 18. The event will take place in Sept-Iles, Quebec at the Hall du Cégep. For more information you can call 418-583-2604. Read all about it:
What kind of event are you planning in honor of Rare Disease Day?
I’m planning a fund raising activity in the form of a dance-o-thon. My mother is also soliciting her friends and family to help with fundraising. Because I know other families living with a rare disease in my part of the country, I decided to not only do this for CHI but also in support of the Quebec orphan disease organization.
What a great idea to have a dance-a-thon! How did you come up with such an interesting concept?
I had been brainstorming with myself to come up with a good idea to raise funds for CHI and while I was at a dance party a friend had organized, I had the thought that people might actually warm to the idea of a whole day of dancing. I love dancing and it has always been a good way for me to eliminate stress. So I thought that it could also give families living with a rare disease an opportunity to have fun and recharge their batteries.
How is it going to work?
The dance-o-thon will last 12 hours, from 11 am to 11pm. We will have all styles of music throughout the day, teachers will be showing steps for different dances, and we will have dance shows. And of course, we will have families talking about their life with a rare disease. There will be an entry fee of $10 and people will be able to come and go according to the music they prefer.
Where will it be held?
The college my daughter Catherine is attending has agreed to host our event for a very low cost. They are being very helpful in the organization and have even printed our posters and tickets for free. They will also be providing sound and light system and the cafeteria will open especially for us.
Can you share some information about the Quebec Rare Disease Organization?
The Regroupement québécois des maladies orphelines (RQMO) was founded only 2 years ago. Its need was felt because Canadian law is different for all provinces and rare disease struggles are often held at the legislative level. Also, Quebec is the only French unilingual province of Canada and there is a need to make information available in French to its population. As an enormous first step, they have moved the Quebec Department of Health to put in place a strategic plan for orphan diseases.
How did you get involved in rare disease advocacy?
The question makes me smile. I’m not sure I chose to advocate for rare diseases. Rather, a rare disease chose my daughter. Seeing that she has been relatively lucky despite her disease and that others aren’t as lucky as she, it is impossible for me to stay quiet and do nothing. I feel very much for all the HI children around the world who suffer from being diagnosed late and for those who do not have access to proper medication and treatment. I hope that I can help change that. There is a lot of work that needs to be done to make the lives of all those living with a rare disease easier. I encourage everybody that feels the urge to act to put aside the barriers that are stopping them and let their imagination come up with activities to raise awareness.
Isabel Calderon lives in Clark City, Quebec . She has been a congenital hyperinsulinism (HI) parent advocate for many years, since her daughter who is now in college was a young child. Isabel has been on the board of CHI since its inception in 2005 and she is also a founder of the SUR1 website, one of the first Internet sites dedicated to supporting HI families. Isabel is very supportive of the international HI community and her knowledge of languages has facilitated her ability to support families all over the world. She is bi-lingual in French and English and speaks and reads Spanish, as well.
