ADCY5.org

03/06/2026

REMINDER: Family Meeting on Saturday, March 7 at 10:00 a.m. Pacific (Los Angeles) and 10:00 p.m. Pacific (Los Angeles). The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

AGENDA
-Share how you spent Rare Disease Day
-Who do you want to hear from? (We can add someone from our board to calls or a researcher we haven't heard from)
-Summer activity sign-ups for kids start soon. What are ideas people have for activities, accessible programs, and ideas
-Ideas to have more families join these calls

03/01/2026

Please join us for the next Family Meeting via Zoom!

We’re offering two meeting times to accommodate different time zones. The agenda will be the same for each, so there’s no need to attend both—though you’re more than welcome to if you’d like.

CALL #1: Saturday, March 7, 2026 – 10:00 AM Pacific Time (Los Angeles)

CALL #2: Saturday, March 7, 2026 – 10:00 PM Pacific Time (Los Angeles)

ZOOM: The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

If you need assistance with time zones, this link is very helpful:

Effortless time conversion and world time. Schedule conference calls, webinars & online meetings, plan travel and track flight arrival time across time zones.

12/05/2025

REMINDER! Family meeting tomorrow:

Please join us for the next Family Meeting via Zoom!
We’re offering two meeting times to accommodate different time zones. The agenda will be the same for each, so there’s no need to attend both—though you’re more than welcome to join both sessions if you’d like.
CALL #1:
Saturday, December 6, 2025 – 10:00 AM Pacific Time / 7:00 PM Central Europe Time
Sunday, December 7, 2025 – 5:00 AM Australian Eastern Daylight Time
CALL #2:
Saturday, December 6, 2025 – 10:00 PM Pacific Time
Sunday, December 7, 2025 – 7:00 AM Central Europe Time / 5:00 PM Australian Eastern Daylight Time
ZOOM:
The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

11/28/2025

Please join us for the next Family Meeting via Zoom!

We’re offering two meeting times to accommodate different time zones. The agenda will be the same for each, so there’s no need to attend both—though you’re more than welcome to join both sessions if you’d like.

CALL #1:
Saturday, December 6, 2025 – 10:00 AM Pacific Time / 7:00 PM Central Europe Time
Sunday, December 7, 2025 – 5:00 AM Australian Eastern Daylight Time

CALL #2:
Saturday, December 6, 2025 – 10:00 PM Pacific Time
Sunday, December 7, 2025 – 7:00 AM Central Europe Time / 5:00 PM Australian Eastern Daylight Time

ZOOM:
The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

08/09/2025

Family meeting today ~ We had a great meeting introducing Dan Bradbury, Chairman of our board. Please join tonight for the same agenda at 10:00 PM Pacific time. The link to join is on Slack or leave a comment here with your email.

08/09/2025

REMINDER - Family Call on Saturday, August 9, 2025:

ADCY5.org Family Meeting Invitation
Please join us for the next Family Meeting via Zoom!

We’re offering two meeting times to accommodate different time zones. The agenda will be the same for each, so there’s no need to attend both—though you’re more than welcome to join both sessions if you’d like.

DATE: Saturday, August 9, 2025

CALL #1: 10:00-11:00 AM Pacific Time
CALL #2: 10:00-11:00 PM Pacific Time

ZOOM: The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

AGENDA:
• Organization Update
• Introduce ADCY5.org’s Chairman of the Board: Daniel Bradbury - https://www.linkedin.com/.../bradbury.../details/experience/
• Q&A

We look forward to seeing you soon!
Gay and Steve Grossman

07/31/2025

ADCY5.org Family Meeting Invitation

Please join us for the next Family Meeting via Zoom!

We’re offering two meeting times to accommodate different time zones. The agenda will be the same for each, so there’s no need to attend both—though you’re more than welcome to join both sessions if you’d like.

DATE: Saturday, August 9, 2025
CALL #1: 10:00-11:00 AM Pacific Time
CALL #2: 10:00-11:00 PM Pacific Time

ZOOM: The Zoom link will be posted on Slack. If you are not on Slack, please email [email protected] for details.

AGENDA:
• Organization Update
• Introduce ADCY5.org’s Chairman of the Board: Daniel Bradbury - https://www.linkedin.com/in/bradburydaniel/details/experience/
• Q&A

We look forward to seeing you soon!

Gay and Steve Grossman

03/09/2025

Please join us for a family call on:

Saturday, March 22nd 10:00 AM Pacific Time

Meet new families who have joined our community due to a recent diagnosis or it has been the right time to join. ALL families are invited to join this call. Let’s welcome our newest families. LINK to join is on SLACK.

If you need access to Slack, please email [email protected].

02/28/2025

Rare Disease Day - We are raising awareness and growing our community! Check out our new map.

If you are a family in our community and do not see your city represented, let us know here: https://www.adcy5.org/contact

We'd like to connect with you.

ADCY5.org Community Members

08/14/2024

Global Genes Opportunity for families:

Applications are now open for the Fall 2024 semester of the RARE Compassion Program! This year, we have joined forces with the Ross University School of Medicine and their dedicated medical students. We invite individuals and families impacted by rare diseases to take part in this year's program.

01/23/2024

Please participate to share your story and raise awareness for ADCY5- Movement Disorder.

Have you wanted to tell the story of your life with a rare disease as a documentary or a short video? Global Genes has partnered with The Disorder Channel to present workshop trainings to get you ready to make your story into a short film. This workshop will provide you with the tools and informatio...