Raising Awareness for Rare Disease Day and Mitochondrial Disease

Many of us struggle with not knowing how we can make an impact on Rare Disease.  Whether we are faced with the day-to-day difficulties of a rare disease itself, or we are passerby’s watching others’ demanding fight – many of us find ourselves scratching our heads on how we can help spread awareness and/or raise funds for great causes such as rare disease.  Global Genes Project has a simple method to raise awareness, wearing “jeans” in support of “genes”.  But, many of us still ask, how exactly do we get organizations, business and the like to participate?

I found the answer when I met Susan Stover, Events and Development Director for MitoAction. 

Following is our interview:

Susan!  It is such a pleasure to meet you.  What is MitoAction and their mission? 

Susan: MitoAction’s vision is to create a community of support that reaches every child, adult, and caregiver affected by a mitochondrial disease, a rare gene disorder.

What did your Rare Disease Day Campaign consist of?

Susan:  We started in January sending an e-mail blast to our database contacts.  This database consists of businesses, organizations, family members, and anyone who has made a connection with us at MitoAction.  In the e-mail, we suggested our contacts ask their employer’s and co-workers to support the Global Genes Project “Jeans for Genes” initiative on February 29 by wearing their jeans, as well as donating five dollars for Mitochondrial disease.  We explained that the money raised would help fund MitoAction Awareness Kits.  We also provided facts about rare disease, the GGP logo and how they can obtain donation boxes for MitoAction.  An event was also posted to our website.

So you sent donation boxes to participants of the campaign?

Susan: Yes, along with MitoAction informational brochures and handouts.  Our database is comprised of people all across the country: Massachusetts, Florida, Texas, Pennsylvania, Virginia and so on.  Not everyone requested a donation box, many of our participants took the opportunity to raise awareness by “just wearing Jeans”.

Tell me a little about the participants?

Susan:  We encouraged our community to realize that whether you are a parent, in the medical industry, or know someone you are connected to within a business  – anyone can make a difference no matter what level of participation.

You even had a welding company participate?

Susan:  Yes!  Through connections outside of our database –  a welding company, because they already wear jeans every day, had their workers make donations.

Who were some of the other participants?

Susan:  We had a total of 18 businesses and active participants who made their own events around the actual event.  One company who also wore jeans every day made donations and matched the funds of the total amount.

A hair salon in honor of one of the families whose son passed away after 3 days of their mitochondrial diagnosis, participated in a whole weeks worth of activities where people made donations, posted fliers, and wore their jeans of course!

One school held a metabolic disorder learning day on March 7 and tied the event with a Rare Disease Day/Wear Your Jeans day with nursing students and other campus members.  They had a table with brochures and fliers about Mitochondrial Disease, rare disease and “Jeans for Genes” initiative.

Susan:  It goes to show, it’s not difficult and not as intimidating as you think – or time-consuming. or laborious to make a difference.

What Social Media efforts contributed in your success?

Susan:  We had great Facebook postings.  Friends of friends took the initiative on their own to move forward without the assistance of MitoAction – just because of our posting.  It was clearly a “power of the people” working collaboratively to raise awareness and make a difference.  We tweeted a few times as well.

What was the end result or response of your awareness efforts?

Susan:  MitoAction was very pleased with the response.  We don’t have all the donations in yet – but so far we have close to $2,400!  And of course, hundreds of photos and postings on Facebook of those participating and showing their support by wearing Jeans for Genes!  This was a first-time campaign for us, as we typically do not ask to raise funds or awareness outside of our annual awareness walks and socials.  It was great to the see the response stemming from Massachusetts down to Texas – knowing it wasn’t local but made an impact across the miles.  As with any organization, we are fortunate to have so many individuals who are always involved and active with our awareness efforts.  The fact we had people we have never had a chance to speak with personally and who took it upon themselves to be participatory and be so effective was incredibly inspiring.

What is the plan for the money you have raised?

Susan:  The money is going to help us fund our awareness kits.  We produce and supply all of our own educational material, including shipping costs to any patient and/or family member at no charge.  Overall, the efforts of the participants not only helped in raising awareness across the board for rare disease, they in effect helped themselves and the entire Mitochondrial Disease community – because any patient or family that requests an awareness kit or kit to be sent to a clinician – the funds raised will help with those requests.  It was an amazing response to a simple campaign!

What was most encouraging about this campaign?

Susan:  People saw what an easy ask it was of something from other individuals, co-workers, and employees to help spread awareness and help raise funds by simply wearing jeans and donating five dollars.  Just the ability of people to do something that simple goes so far because of the awareness it spreads considering Mitochondrial Disease not a household name.

Will you engage in another campaign on Rare Disease Day next year?

Susan:  ABSOLUTELY!