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 [email protected] 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)
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:
Make it official- Order an “ACD Slaves to the Cause VOLUNTEER” shirt and some Understanding CCDS Brochures from the ACD Shop. You’ll draw some attention and be prepared to advocate.
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).
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 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.
Start Your Amazon Shopping at smile.amazon.com
If you’re already shopping Amazon.com, make the switch to smile.amazon.com. Same products and prices and Amazon will donate 0.5% of the price of your eligible purchases to the Association for Creatine Deficiencies!
Log in with your Amazon password or create an account
Go to “Your Account”
Select “Association for Creatine Deficiencies” as your charitable organization
Shop!
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:
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!
“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.
ACD is launching a new registry in early 2021 that will be a shared resource of anonymous data to all qualified CCDS researchers. Watch for announcements in the coming months for more details.
GivingTuesday is around the corner! This event was created in 2012 as a simple idea: a day that encourages people to do good! Over the past eight years, this idea has grown into a year-round global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity! Mark your calendars for December 1st and consider giving to the ACD. Your generosity can make a difference in the lives of patients and families impacted by CCDS! To learn more about how we are using your donations and to donate now visit our Holiday Heroes page.
