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2016 Recap:
In 2016, we continued our fundraising momentum, thanks to generous donors such as our community members, our families and friends, and corporations that all share our mission of one day having a cure for CCDS, and we are so thankful! With our fundraising events including our recent Holiday Heroes campaign, Shop for a Cause, and our first annual Walk for Strength, we raised over $57,000 this past fiscal year.
These funds continue to allow us to operate and champion the cause of eliminating the challenges of CCDS through education, advocacy, and research. The ACD Board of Trustees meets weekly to review on-going strategic goals and their progress. Growth has always been a focus and will continue to be, and I know this past year will be one that we will always look back on with enormous pride.
Click here to read more >>
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The results of Holiday Heroes 2017 are here! Contributions from ACD supporters came in at over $12,000 during the three month campaign. This, along with a generous $10,000 corporate match, totaled over $22,000 raised. 100% of donations from this annual fundraiser go directly toward sustaining our key initiatives. To read more about what ACD is working on, click here to view our 2016 annual report.
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CCDS Awareness Day (Feb. 1, 2017) and Rare Disease Day (Feb. 28, 2017) are right around the corner! It's not too late to purchase CCDS Awareness gear to show your support!
Click here to shop >>
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Make your Amazon purchases count towards a good cause by always starting your Amazon shopping at: smile.amazon.com. Use charity keywords: “Association for Creatine Deficiencies" or this link and a portion of your purchase of qualifying merchandise will go to the ACD. Thank you for your support!
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Upcoming Webinar Re: CTD Observational Study
Lumos Pharma is hosting a webinar on February 8th @ 11am CT to help CTD families better understand:
- What an observational study is
- How they may be able to participate in the Observational Study of Creatine Transporter Deficiency (CTD, SLC6A8) in males
- Click here to register for the webinar and/or to submit questions in advance.
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RUSP Updates
On February 9th, the ACD and interested families will once again have the opportunity to speak to the ACHDNC on the importance of adding GAMT to RUSP. This will be held via webinar and anyone is welcome to participate in the Public Comments of the meeting. Registration is expected to open this week at the ACHDNC website.
It is our sincere hope that Utah newborn screening (currently the only state testing for GAMT) will soon identify an infant with GAMT, to help fulfill the last requirement of proving that GAMT can be detected at birth. Until that day, the ACD will continue to ask individual states to consider putting GAMT on their newborn screening panel.
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Paris CTD Workshop Update
The ACD was honored to attend and speak at the CTD workshop, organized by Dr. Aurore Curie, Dr. Vincent des Portes, and representatives of DeficSience and Xtraordinaire. For two days, CTD held center stage. Discussions focused on the disease itself, importance of collecting natural history data, potential intervention therapies, and the need for clinical trials.
Click here to read the full recap about the CTD Workshop in Paris and to view ACD’s presentation.
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2nd Annual Walk For Strength: June 10th, 2017
Make good on your New Year's resolution to get in shape! Start planning now for a "Walk for Strength" in your community on Saturday, June 10th. This is a great way to raise awareness of CCDS in your hometown. It can also open discussions with friends, neighbors, and families about ACD and the work they are doing to support CCDS. Early registration will run from February 15th - May 15th. After that, late registration prices will remain the same ($20 for adults and $15 for children), but shirts will not be included.
**Early bird special this year! Register by April 30th, use coupon code "wfs group" and get 15% off four or more registrations. Click here for more information and to get registered!
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CCDS Awareness Day
WEDNESDAY, FEBRUARY 1, 2017
It’s official! February 1st is “Cerebral Creatine Deficiency Syndrome Awareness Day.”
Help spread awareness of CCDS by celebrating this day in your community.
Some ideas include:
- Create a personal campaign on our CrowdRise.com page (big orange "create a fundraiser" button at the bottom of the page- they walk you through, step by step) and share it with your friends on Facebook!
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Speak at your child’s school about CCDS.
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Wear CCDS apparel available at the ACD Shop.
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Distribute awareness brochures and share your story with pediatricians, developmental pediatricians, pediatric neurologists, and geneticists in your area. For brochures and other materials to share on CCDS Awareness day, please email info@creatineinfo.org.
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Blog, Tweet, Facebook, and Instagram your CCDS story on this day with the hashtags #CCDS #CCDSDAY and #ACD.
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Rare Disease Day
TUESDAY, FEBRUARY 28, 2017
CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day. Help us join with other rare disease groups in spreading CCDS Awareness on February 28, 2017. For more information about Rare Disease Day in the US, click here.
Shop and support ACD to get your CCDS Awareness merchandise today!
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ACMG
March 22-24, 2017
Phoenix, AZ
Once again the ACD will be attending the 2017 ACMG Annual Clinical Genetics Meeting in Phoenix, AZ. The meeting provides genetics professionals with the opportunity to learn how genetics and genomics are being integrated into medical or clinical practice. The ACD attends this important conference to help educate medical and clinical geneticists, genetic counselors, pediatric, obstetric, and maternal fetal specialists, laboratory personnel, researchers and educators. Medical practitioners who provide services for patients with, or at risk for, genetically influenced health problems. If anyone lives in or near the Phoenix area, we would love to meet you and/or your children in person! Please contact Kim at Kim@creatineinfo.org if you are interested.
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