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AGS Advocacy Association

Home
About
About AGS
About the AGSAA
Contact
Family Resources
Clinical Trials
Orientation FAQ
JAK Inhibition
Family And Physician Reference
Clinical Care Recommendations
Programs and Resources
Family Planning FAQ
Find a Doctor
Connect to the Community
Reverse Transcriptase Inhibitors
Podcast
Grief & Loss Portal
Projects
AGS ECHO
Contact Registry
Citizen Health Community
2023 ULF Family Conference
2022 AGS Family Symposium
Internships
Newborn Screening
News and Updates
Donate
Middleton Farm that yielded $1,400 for AGSAA!
January 2, 2017
Megan Reamer
Middleton Farm that yielded $1,400 for AGSAA!
Megan Reamer
January 2, 2017

Middleton Farm that yielded $1,400 for AGSAA!

Megan Reamer
January 2, 2017

From Stephanie Campbell Weinberg

Go Back to 'In The News'

Newer PostWhen I Watched My Brother Take His First Steps With a Rare Condition
Older PostHarris' Heroes: Amazing 8-year-old girl honors friend, raises money for AGS research
  • July 2024
    • Jul 1, 2024 Nonverbal Cognitive Skills in Children With AGS Jul 1, 2024
  • June 2024
    • Jun 11, 2024 AGSAA Launches Our New Contact Registry Jun 11, 2024
  • April 2024
    • Apr 18, 2024 RNA-targeted Therapy Offers Breakthrough in Aicardi-Goutières Syndrome Apr 18, 2024
  • December 2023
    • Dec 11, 2023 Biogen Survey Re-Opened until 12/31!!! Use Your Voice Now to Impact Clinical Trial Design in 2024! Dec 11, 2023
  • September 2023
    • Sep 18, 2023 AGS Community Exceeds Expectations: Pausing the Biogen Patient Registry Study Sep 18, 2023
    • Sep 17, 2023 Introducing the Faculty Members of the Aicardi-Goutieres Syndrome ECHO Program Sep 17, 2023
    • Sep 12, 2023 Contribute to AGS Clinical Trial Development: Join the Biogen Study Sep 12, 2023
  • August 2023
    • Aug 15, 2023 Webinar: Biogen, Clinical Trials, and the AGSAA Patient Registry Aug 15, 2023
  • July 2023
    • Jul 31, 2023 Watch the Replay, AGS @ the 2023 ULF Family Conference Jul 31, 2023
  • May 2023
    • May 22, 2023 The AGSAA and Transposon Therapeutics, Inc. Collaborate To Empower Patients to Make Informed Decisions About Participation in Clinical Trials. May 22, 2023
    • May 16, 2023 The Aicardi Goutieres Syndrome ECHO Program May 16, 2023
  • April 2023
    • Apr 29, 2023 Muscle Tone Management Apr 29, 2023
  • March 2023
    • Mar 15, 2023 The AGS Scale Mar 15, 2023
  • January 2023
    • Jan 30, 2023 Reverse Transcriptase Inhibitors & AGS Jan 30, 2023
    • Jan 23, 2023 The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) FY23 Funding Opportunities Jan 23, 2023
    • Jan 23, 2023 Late-Onset AGS Jan 23, 2023
  • November 2022
    • Nov 29, 2022 2022 Giving Tuesday Campaign Nov 29, 2022
    • Nov 8, 2022 Tells Us Your JAK Inhibition Story Nov 8, 2022
  • October 2022
    • Oct 30, 2022 Flu and RSV Are on the Rise! Oct 30, 2022
    • Oct 18, 2022 Introducing the AGSAA Podcast Oct 18, 2022
    • Oct 14, 2022 SARS-CoV-2 mRNA-based vaccines in the Aicardi Goutières Syndrome Oct 14, 2022
  • August 2022
    • Aug 31, 2022 Leukodystrophy Awareness Month, Meet Aicardi-Goutieres Syndrome (AGS) Aug 31, 2022
    • Aug 26, 2022 An Open Letter to AGS Physicians Aug 26, 2022
    • Aug 24, 2022 With Gratitude, In Memory of Geoffrey J. McHale Aug 24, 2022
    • Aug 18, 2022 Our Bittersweet Story of an Effective Treatment Just Out of Reach Aug 18, 2022
    • Aug 15, 2022 Eli Lilly, Advance Mission to Support Debilitating Brain Disease With Proven Medication Aug 15, 2022
    • Aug 12, 2022 Patient Registry Participant Breakdown, August 2022 Aug 12, 2022
    • Aug 12, 2022 Introducing AGSAA Grant Awardee, Dr. Barney Viengkhou Aug 12, 2022
    • Aug 11, 2022 Driving Newborn Screening To The Next Stage Aug 11, 2022
    • Aug 9, 2022 A Helping Hand When You Need it Most Aug 9, 2022
  • July 2022
    • Jul 28, 2022 AGS Patient Registry Virtual Walkthrough, Enrolling and Participating Jul 28, 2022
    • Jul 20, 2022 Introducing AGSAA Grant Awardee, Dr. Jessica Garau Jul 20, 2022
    • Jul 17, 2022 AGS Patient Registry Introduction and Perspective Jul 17, 2022
    • Jul 1, 2022 AGS Researchers Are Not So Rare! Jul 1, 2022
  • June 2022
    • Jun 26, 2022 Relapse and Recurrent Flares Appear Common and Impactful to AGS Families Jun 26, 2022
    • Jun 3, 2022 Documenting and Characterizing AGS Triggers and their Consequences Jun 3, 2022
    • Jun 3, 2022 Modeling Areas of Concern for AGS Families, Stage 2 Jun 3, 2022
  • May 2022
    • May 26, 2022 Applications Submitted for Multiple Patient-Partnered Collaborations (PPC) Grants May 26, 2022
    • May 20, 2022 COVID-19 Vaccine Guidance May 20, 2022
    • May 13, 2022 Join Our Growing Team May 13, 2022
    • May 12, 2022 Additional Support and Resources for Securing Treatment with JAK Inhibitors May 12, 2022
    • May 4, 2022 Register As an Organ Donor, Help Cure AGS May 4, 2022
    • May 2, 2022 Patient Registry Breakdown, May 2022 May 2, 2022
  • April 2022
    • Apr 27, 2022 Message the AGSAA on WhatsApp! Apr 27, 2022
    • Apr 25, 2022 📣 The AGSAA Goes Global 🌍 Apr 25, 2022
    • Apr 23, 2022 Modeling Areas of Concern for AGS Families Apr 23, 2022
    • Apr 8, 2022 Early Data About COVID-19 Experiences (Infection and Vaccination) Apr 8, 2022
    • Apr 6, 2022 Accelerating Research Through Patient Advocacy Apr 6, 2022
  • March 2022
    • Mar 24, 2022 Documenting Experiences with COVID-19 in AGS Mar 24, 2022
    • Mar 23, 2022 Developing Therapies and the Importance of Patient and Family Reported Outcomes Mar 23, 2022
    • Mar 16, 2022 Request For Applications, AGSAA Young Investigator Grant Mar 16, 2022
    • Mar 14, 2022 Industry Partners, Promising Developments! Mar 14, 2022
    • Mar 8, 2022 Patient Registry - Safety of COVID Vaccination in AGS Investigation Mar 8, 2022
  • February 2022
    • Feb 28, 2022 Rare Disease Day! Rare Researcher Fundraiser! Feb 28, 2022
    • Feb 27, 2022 AGS Dads Unite! Feb 27, 2022
    • Feb 27, 2022 AGS Community Driven Innovation and the Patient Registry Feb 27, 2022
    • Feb 26, 2022 Rare Disease Day Fundraiser for the AGSAA Rare Researcher Grant Feb 26, 2022
    • Feb 22, 2022 Next Step for the Patient Registry, a COVID/Pandemic Study Feb 22, 2022
    • Feb 18, 2022 Post Symposium Update Feb 18, 2022
    • Feb 12, 2022 Patient Registry Enrollment Picks Up Speed! Feb 12, 2022
    • Feb 3, 2022 AGSAA, Biogen, LunaPBC, and Genetic Alliance Launch Community-Led Discovery Program for Aicardi-Goutières Syndrome Feb 3, 2022
    • Feb 3, 2022 2021 ACR and EULAR Recommendations Regarding Diagnosis and Treatment of AGS Feb 3, 2022
  • January 2022
    • Jan 28, 2022 Join Our AGS Dads Group! Jan 28, 2022
    • Jan 27, 2022 AGS Patient Registry Jan 27, 2022
    • Jan 20, 2022 2022 AGS Family Symposium Jan 20, 2022
    • Jan 5, 2022 AGSAA Tea Party Jan 5, 2022
  • December 2021
    • Dec 20, 2021 Holiday Gift Guide Dec 20, 2021
    • Dec 16, 2021 AGSAA December 2021 Survey Dec 16, 2021
    • Dec 15, 2021 Signup For Our Secret Video Gift Swap Dec 15, 2021
  • November 2021
    • Nov 30, 2021 Together We Gave! Nov 30, 2021
    • Nov 30, 2021 Giving Tuesday 2021 Nov 30, 2021
  • October 2021
    • Oct 27, 2021 October 2021 Newsletter Oct 27, 2021
  • July 2021
    • Jul 12, 2021 The NHS in the UK recommends baricitinib for children with AGS Jul 12, 2021
  • January 2017
    • Jan 2, 2017 When I Watched My Brother Take His First Steps With a Rare Condition Jan 2, 2017
    • Jan 2, 2017 Middleton Farm that yielded $1,400 for AGSAA! Jan 2, 2017
    • Jan 2, 2017 Harris' Heroes: Amazing 8-year-old girl honors friend, raises money for AGS research Jan 2, 2017
    • Jan 2, 2017 VT Toddler Fighting Rare Disorder Jan 2, 2017
  • August 2016
    • Aug 12, 2016 7-Year-Old With Rare Disease Dies Day After Becoming Honorary Marine Aug 12, 2016
    • Aug 12, 2016 My Brother, the Hospice Graduate Aug 12, 2016
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