Dup15q Rare Disease Day Challenge

Welcome to our first Rare Disease Day Challenge! We aim to raise $75,000 in 30 days to support our mission to help fund life-changing therapeutics and provide support for our families affected by Dup15q syndrome.

Raising $75,000 alone is not easy, but raising $75,000 with each of our supporters working together will be fun and bring further awareness to Dup15q syndrome, all while honoring our loved ones on Rare Disease Day (February 29).

So what is the Challenge?

We are seeking individuals to set a goal amount of funds to raise over 30 days. We would love to see a minimum of $1k per person (or more) to help us reach our goal. The Challenge will take place from February 1 - March 2, 2024. You can do this however you feel led (ethically, of course). We provide a link, you create a fundraising page, you send it to your friends and network, and together, we can meet our goal! Our theme for Rare Disease Day is #RareNotQuiet.

To make it even more fun, we are making this a little friendly competition. Each week we will give away a prize to the top earner that week. In week 4, we will give a top earner award and a grand prize award for the top earner throughout the whole competition. Let's face it; you also would be our first Rare Disease Day Champion!

Its a pretty quick and easy way to make an enormous impact collectively.

When: Participants can start accepting funds on their fundraising page on February 1, 2023 at Noon ET, and fundraising ends on March 2, 2023, at 10:00pm ET.

We purposely chose this time frame in honor of Rare Disease Day, an annual awareness day for the 300 million people living with a rare disease.

How do you raise funds?

We will give you a fundraising page to tell your story of why you are participating. Don’t worry. We will provide you with sample pages and information about Dup15q syndrome.

You can simply send your fundraising page to family, friends, and coworkers.

You can get creative if you like a little more of a challenge. You can host your own fun event, a wine-tasting event, bake sale, burpee challenge contest or a popular way is to wear your jeans to work day in honor of Rare Disease Day. A Rare Blue Day (jeans) for Dup15q if you will.

You could even do this through your work and hold your own contest.

What you will find though is people will also give if you just ask.

One super easy hint: if you or your friends work for a company that offers a company match, you will raise your money even easier and we can help you with that as well.

The Impact:

Dup15q Alliance is the only nonprofit organization worldwide 100% dedicated to the understanding and treatment of Dup15q syndrome.

In 2024,

- we want to increase our funding towards research in finding a therapeutic for our patients

- provide more family support for families impacted by our syndrome

- add 2 clinics to our already 17 clinics worldwide, and

- continue our work in developing a long-term clinical picture (natural history) of how individuals are affected by Dup15q across the lifespan.

Thank you for your consideration and excitement for helping us be the voice for patients with Dup15q syndrome.

For any questions, please email Carrie Howell - carrie.howell@dup15q.org.