Get Involved

Take the A.C.D. Challenge

Together We Can Change the Future of CCDS

The ACD Challenge is designed at moving the needle to advance research for better treatments and cures for the CCDS patient. Completing these three simple tasks will change the future of CCDS. We invite every family to participate!



“A” is for Advocate!

Simply put, an advocate speaks out for a cause they support. Advocating for CCDS can be as simple as any of the following:

  • Join the CreatineInfo Registry
  • Follow hashtag #CreatineInfo on Instagram and Facebook
  • Write a post for the ACD blog
  • Attend local rare disease day events
  • Give ACD brochures to neighbors, teachers, and friends
  • Work your network and don’t be shy! Do you know someone who knows someone that works in print or media or has connections with a celebrity? Tell them your story and introduce the ACD!
  • Become a CCDS advocate

“C” is for Coriell biobanking

Researchers are actively requesting samples from CCDS patients to complete research in their labs. They need samples from as many unique mutations as possible. If you want research done on your child’s mutation, this is how you can make that happen! The Coriell Institute will help you from start (collection) to finish (storage and distribution of samples to researchers).

  • Email Coriell today and they will send you a kit with instructions. *This is NOT limited to families in the U.S.
  • Tell your doctor you need a collection performed. He/she may offer to perform the collection at your next appointment or refer you to a lab that can.

Check Coriell’s website to follow the progress! Some samples are already available to researchers. Let’s show those researchers that we are ready to support their work!!

“D” is for Data shared with the patient registry!

How does a pharma corporation know if the drug they are working on is successful? They collect data on many patients in order to form solid conclusions on how CCDS manifest, what are caregivers’ pain points, and what does success look like? “Does everyone’s child bruise easily or just mine?” These questions are answered by a robust patient registry and help guide research as well as provide understanding to families.

The ACD, in partnership with NORD, is launching a Natural History Study Patient-reported Registry on March 15th. Join the registry and help us further research for a better quality of life for those impacted by Creatine Deficiencies. Join at

Be A Champion For CCDS. Volunteer Today.

Help the ACD by volunteering. If you have a skill or interest in any of the following (or ideas of your own), please let us know! Your commitment could be on a monthly basis, or on a one time project. Any help, however small or great is appreciated! Contact to see how you can get involved.

Current Committees:

  • Fundraising (events and corporate sponsorships)
  • Grant Writing
  • Advocacy (including newborn screening)
  • Research and Partnerships
  • Finance and Governance
  • Community Outreach & P.R. (including social media and blog)

You Volunteer, Your Employer Donates to ACD!

Companies with Employer Volunteer Matching

A large number of companies will make a donation to ACD when employees volunteer. If your company isn’t on the list, ask them if they are interested in starting a matching program. Do they directly support one or two favorite charities? Share your family’s story and nominate the ACD!

There are many ways you can “volunteer” and build CCDS awareness in your community!
Here are some ideas:

  • Go for a hike, walk, or bike ride and start some conversations
  • Volunteer at your local school or hospital
  • Serve at a community food bank or soup kitchen
  • Tutor a student
  • Coach a youth sports team
  • Visit a senior center
  • Write a blog post for the ACD
  • Organize a community cleanup
  • Serve on a community or school board
  • Support family or friends affected by CCDS by babysitting for them
  • Watch your kids while your spouse does any of the above
  • Join an ACD volunteer group (see above).

Matching Gift and Volunteer Grant information provided by
Powered by Double the Donation

Host a Fundraiser

Hosting a fundraising event is a great way to educate others about cerebral creatine deficiency syndromes and raise funds to support the ACD’s general fund and research initiatives.

Download our Fundraising Toolkit for tips on planning a private fundraiser or to request an ACD Sponsored Event. If you wish to host an ACD Sponsored Event, we ask that you fill out our Fundraiser Support Request Form.


Examples of private fundraising events include:

  • Silent Auction
  • Hosting a Walk for Strength
  • Yard Sales
  • Walk/Bike/Run competitions with friends
  • Bake Sales
  • Direct Asks
  • Setting up a Personal Fundraising page (e.g. GoFundMe, Crowdrise)
  • Competing in an IronMan, Marathon, or Obstacle Challenge and asking friends, family, and coworkers to pledge their support
  • Biking across your state and getting sponsors and pledges of support
  • Get creative! Friends and family want to support you.

Shop the ACD Online Store

Giving gifts from the ACD Shop shares the cause with friends and family and raises funds for the ACD.

CCDS Orange Ribbon Pins with a gift card acknowledging a donation made on your teacher’s behalf are great for holiday gifts, back-to-school, and teacher appreciation week!

Get creative. Friends and family typically want to learn more and support your efforts. A Powered by Creatine shirt is a great gift for the gym junkie in your life.

“Rohan’s Blend” tea sold by Friday Afternoon Tea in Seattle, Washington donates a portion of every sale to ACD.

Make a One-Time or Recurring Donation

Make a direct donation to ACD by clicking the “Donate Now” button.

Learn more about our Patient Strong general fund and what your donation does for the advancement of CCDS.