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Blog

Home Archive by category "Uncategorized"

Shining a light on Oliver’s Awesome Advocates!

By Ann Geffen | Uncategorized | 0 comment | 30 March, 2021 | 0

We are happy to highlight Team Oliver’s Awesome Advocates today! Oliver was diagnosed with TANGO2 in 2018 when he was 13. Oliver’s parents had already been searching for an answer to his ataxia, episodes and unexplained fatigue for more than 12 years at that point. While they were relieved to have a diagnosis, the poorRead more

Rare Disease Day Special Highlight: Living with a Unicorn

By Ann Geffen | Uncategorized | 0 comment | 28 February, 2021 | 0

This Rare Disease Day, the TANGO2 Research Foundation highlights “Living with a Unicorn” –  a blog by Gloria McDonald, Olivia’s mom. Gloria talks about Olivia, her diagnosis of TANGO2 disease, how their life changed, what they’ve learned along the way, and more. Gloria writes, “We hope that you will feel encouraged and inspired by Olivia’sRead more

TANGO2 Research Project Update & Podcast

By Ann Geffen | Uncategorized | 0 comment | 21 January, 2021 | 2

In Spring of 2020, the TANGO2 Research Foundation granted Dr. Michael Sacher and Dr. Felix Distelmaier an award for their research proposal entitled Characterization Of Human TANGO2: From Biological Function To Therapeutic Strategies. Less than a year later, we are pleased to share that we already have research updates and progress. Dr. Sacher and his team have used fibroblastsRead more

Teaming up with Solace Nutrition to help increase the quality of life for those with TANGO2 Disease

By Ann Geffen | Uncategorized | 0 comment | 1 December, 2020 | 1

Solace Nutrition has teamed up with the TANGO2 Research Foundation to help support our mission of leading the way in finding a cure for TANGO2 related disease.  Solace Nutrition seeks to develop medical nutritional products with a strong scientific background that target diseases which can be better managed through nutrition and thus promote quality ofRead more

Meet Agathe De Miniac, Author of ‘Tango2’

By Ann Geffen | Uncategorized | 0 comment | 11 November, 2020 | 0

Our foundation interviewed Agathe De Miniac for our blog this month. Agathe wrote a book about her family being shaken up by the arrival of three disabled children. We are pleased to share this interview in both English and French below. Click for more information or to purchase the book.   What are the names andRead more

RARE DISEASE CONNECTION TANGO2 PODCAST: Everything to know about TANGO2, from the experts

By Ann Geffen | Uncategorized | 0 comment | 7 October, 2020 | 0

We are pleased to share that Rare Disease Connection, a production of Aspect Health and raredisease.com, recently hosted a podcast with friends of our foundation! Sheena Byerly hosted Dr. Seema Lalani, Jayme Gilmore, and Lindsey Messerschmidt and featured their expertise and experiences with TANGO2 disease. TANGO2 disease has only been described in the last severalRead more

FRIENDS & FAMILY RALLY FOR RYAN

By Ann Geffen | Uncategorized | 0 comment | 21 September, 2020 | 1

This month, friends and family of Ryan Morris held a successful fundraiser to honor his journey living with TANGO2 disease. Ryan’s aunts, uncles, cousins and friends rallied together and gathered donations to set up a booth at the first area Flea Market of the season.  Donations were collected from across eight different states that includedRead more

Chan Zuckerberg Initiative Grant Accelerates TANGO2 Research Foundation’s Funding and Hiring

By Ann Geffen | Uncategorized | 0 comment | 12 August, 2020 | 0

FOR IMMEDIATE RELEASE   CONTACT: Ann Geffen, Executive Director PHONE: 407-459-4427 EMAIL: ann.geffen@tango2research.org   CHAN ZUCKERBERG INITIATIVE GRANT ACCELERATES TANGO2 RESEARCH FOUNDATION’S  FUNDING OF CRITICAL RESEARCH AND HIRING OF EXECUTIVE DIRECTOR   MIDDLETOWN, Conn. (August 12, 2020) –  Within six months of receiving funding from the Chan Zuckerberg Initiative (CZI), the TANGO2 Research Foundation (T2RF)Read more

Welcome to our new Executive Director

By Mike Morris | Uncategorized | 0 comment | 8 July, 2020 | 2

It is with pleasure that we announce the new Executive Director of the Tango2 Research Foundation. Ann Geffen joins us with an extensive and all-encompassing nonprofit background. Geffen came to the Tango2 Research Foundation from March of Dimes, where she was a National Account Manager and previously an Executive Director. There, she managed several accounts,Read more

Summer 2020 Newsletter!

By Mike Morris | Uncategorized | 0 comment | 3 July, 2020 | 0

Our Summer 2020 Newsletter is now available! Please click image below to learn more about all the exciting things going on at the TANGO2 Research Foundation as we continue our search for answers. Be sure to Subscribe to Our newsletter to receive it in your inbox.Read more

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Recent Posts

  • Shining a light on Oliver’s Awesome Advocates!

    March 30, 2021 | Uncategorized

  • Rare Disease Day Special Highlight: Living with a Unicorn

    February 28, 2021 | Uncategorized

  • TANGO2 Research Project Update & Podcast

    January 21, 2021 | Uncategorized

  • Teaming up with Solace Nutrition to help increase the quality of life for those with TANGO2 Disease

    December 1, 2020 | Uncategorized

  • Meet Agathe De Miniac, Author of ‘Tango2’

    November 11, 2020 | Uncategorized

Contact Us

TANGO2 Research Foundation
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info@tango2research.org

Copyright 2018 - TANGO2 Research Foundation Incorporated | All Rights Reserved
  • About TANGO2
    • Symptoms
    • Early Signs of TANGO2
  • For Families
    • New Diagnosis
    • TANGO2 Study Now Underway
    • Our Stories
    • TANGO2 Conference – Houston 2019
    • Family Resources
    • Sammy’s Angels
    • Submit Your Story
  • Get Involved
    • Volunteer
    • Ways to Give
    • Fundraising Ideas
    • Apply For Grants (Researchers)
  • Research
  • About Us
    • Our Mission & History
    • Our Leadership
    • Scientific Advisory Board
    • Blog
    • Committees – CALL FOR VOLUNTEERS
    • Press Kit
TANGO2 Research Foundation