By Susan Coddon

Earlier this summer, I hosted a Facebook fundraiser for my birthday and raised $671 to advance APBD research. I was so touched to see my family and friends (some from as far back as high school) step in and help me exceed my goal of raising $500. Finding an accurate diagnosis, treatments, and a cure were important to me when my husband LD was initially misdiagnosed with MS. Fortunately, we got to an accurate APBD diagnosis within months and were connected with the Foundation. This community became my lifeline. Since my husband’s passing three years ago, I am more aware of the time we have — and don’t — to find a cure for this devastating disease. 

Whether you’re celebrating a birthday, wedding, bar/bat mitzvah, graduation, anniversary, or a special milestone, Facebook has made it easy to organize a fundraiser to help you — and your friends support APBD research. These events aren’t just about raising money; they’re also about spreading awareness among your friends and family. Start your APBD Research Foundation Facebook Fundraiser

Here are some tips to help you get set up: 

1). Planning and timing
Schedule the fundraising event with enough lead time to your special occasion and include 5-7 days post-occasion as well. This gives you — and your family and friends — ample time to talk about your campaign and meet your goal.

2). Set a goal
Make sure to set a realistic goal that you believe you can meet… and exceed!

3). Share your story
Let your friends and family know why the APBD Research Foundation is important to you. Keep it short and sweet, and encourage your loved ones to help you reach your goal.

4). Add a Photo
Sharing a photo increases visibility, adds a face to a fundraiser, and most important – gets people involved. 

5). Make the asks
Not everyone is able to donate, wants to donate, or is comfortable making an online donation. Ask your family and friends to do one of two things: 1) Make a donation OR 2) Share this message with friends and family. The latter helps in so many ways!

6). Share the Fundraiser using other communications channels
Some of your friends and family may not be on Facebook. Be sure to copy the link to your Fundraiser and text or email it to them.

7). Post updates and thank you messages often
Post updates from time to time on your Facebook page, thanking everyone who donated and providing updates about the progress toward your goal. For example, if you hit a milestone of raising $100,  share it with your Facebook friends. 

Thank and acknowledge the donors who contributed to get you this far. Also, every time the fundraiser is mentioned, new people may come to learn about it too!  

On behalf of the APBD community, I appreciate all you do to advance our work. Feel free to contact us with your questions at

Susan Coddon joined the APBD Research Foundation’s Board of Directors in 2010. Susan is a mom and grandmother (‘Tutu’) first! Her second passion is metalsmithing. She designs and fabricates jewelry, tableware, and sculptural pieces in her home studio. It has been her refuge not only during the pandemic but also through her husband’s battle with APBD.