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fNIRS Endpoint Investigation: A Potential Non-Invasive BioMarker Visit creatineinfo.org/fnirs-webinar/ for more information

Update from the ACD 2024 Q2 Newsletter. Visit creatineinfo.org for more information.

Walk For Strength is a global event raising awareness for CCDS and supporting life-changing research! Start your team or register today at www.creatineinfo.org/walk.

0:00 Michela Fagiolini, Opening Remarks- BCH (Boston, USA) 04:20 Mustafa Sahin, TNC, New approaches to rare neurodevelopmental disorders-BCH (Boston, USA) 18:59 Celeste Graham, CTD Parent Experience 35:45 Ellie Wallis, GAMT Sibling Experience 41:20 Sangeetha Iyer, ACD Scientific Advisor 56:12 Heidi Wallis, ACD Executive Director 1:09:09 Irina Anselm, Clinical presentation of CDDs and treatment-...

Community Update recording and companion to the 2024 Q1 Newsletter.

Wow, what a year! 2023 was a big one for ACD-thanks to you, our amazing community. We kicked it off the new year with a newborn screening win (GAMT added to the RUSP) and it all took off from there. We’re proud to share our patient-focused initiatives like EL-PFFD and the Core Outcome Set. We’ve been amplifying the voices of CCDS families through representation at medical symposiums around the ...

Last year, YOU were among the 800 Holiday Heroes that helped us reach our goal of $250,000. Thank you for joining us in the fight to cure CCDS and helping us launch the Creatine Deficiency Research Center. Since then, our community has made significant progress in garnering interest in CCDS from medical and research communities around the world. Watch the video above to see the full scope of ou...

Your support for CCDS research fuels truly life-changing research for kids like Sam. Sam has GAMT and for her, this means she deals with seizures on an ongoing basis. Imagine how different daily life would be if researchers found a therapy to alleviate this one symptom for her The good news is that YOU can help Sam by supporting CCDS research! Donate today at creatineinfo.org/holiday-heroes.

This year you have a special opportunity to make dreams come true for kids like Cadman. Cadman has CTD and his family is hoping for clinical trials in 2024 that will lead to impactful treatments for him. All Holiday Heroes funds go towards 2024 CCDS and your gift make an impact for Cadman and others like him. Give today at creatineinfo.org/cadman!

Make your life-changing donation at creatineinfo.org/holiday-heroes! Your donation will fund research on treatments to improve the lives of patients with creatine deficiencies. This year ACD aims to fund the second year of projects at the Creatine Deficiency Research Center, three new Young Investigator Fellowships, and more. Right now the hope has never been greater. But the need has also neve...

ACD Community, there are two big ways you can make a big impact on our Holiday Heroes goal! 1) Charitable Giving Partnership: If you have a relationship with a company you work for or with, reach out and see if they are looking for charitable opportunities. If you can coordinate a warm connection, we can handle the rest. Send the contact info for that individual to heidi@creatineinfo.org! 2) As...

LINKS: Dr. Steven Baker Interview czcams.com/video/3v-pQPrwcC8/video.html Donate to Holiday Heroes creatineinfo.org/holiday-heroes Corporate sponsors email info@creatineinfo.org Thank you for your support in making 2023 an amazing year for CCDS research. Learn about what we've accomplished, and what's next in this video from ACD's Vice Board Chair, Randy Allen. We are aiming even higher for 202...

In our first Community Chat event, Dr. Steven Baker gave an update on the progress his team has made in year 1 of the Creatine Deficiency Research Center and shared plans for research in year 2. Help us continue this vital research by donating to our Holiday Heroes campaign at creatineinfo.org/holiday-heroes.

Community Update recording and companion to the 2023 Q4 Newsletter.

Community Update Video 8/2/23

2023 CCDS Virtual Conference | Caregiver Session | August 18

2023 CCDS Virtual Conference | Day 1 | August 25

2023 CCDS Virtual Conference | Day 2 | August 26

3/30/23 Community Update Webinar

CCDS Day 2023 Video - German

CCDS Day 2023 Video - Spanish

CCDS Day 2023 Video - English

CCDS Day 2023 Video - French

CCDS Day 2023 Video - Portuguese

CCDS Day 2023 Video - Italian

CCDS Day 2023 Video - Dutch

Interview with Dr. Steven Baker

EL-PFDD Introductory Webinar

CCDS Expert Panel Webinar - November 1, 2022