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Barth Syndrome Awareness Day

Advocate Locally

Advocate Locally

Contact Your Representative

1.  Send your US House Representative an email
Option 1: The simple approach to send an email to your US House Representative is by simply completing this Phone2Action Form which contains the content of the suggested template provided below.

Whether sending a message to your US House Member through the Phone2Action form or from your email address, it is always helpful to personalize your message (see suggested in yellow highlighted sections below). 

This is your message.  We are just trying to make this as easy as possible for you to make this ask.  If you would prefer to write your own letter, GO FOR IT!   

Option 2:  Do it yourself  (steps as follows)

  1. Find your Member by entering your contact information in this Phone2Action form 
  2. Click Find Legislators 
  3. Select the name of the Legislator
  4. Select the way that you wish to contact the Member 
    1. Website which leads to their email form
    2. Tweet 
    3. Call the DC office with the number provided in the search

In addition to sending a message through the email form, it’s always a good idea to send a direct email to one of the staff members. Please contact Shelley Bowen so BSF can help connect you with the appropriate staff members in your Representative's office.   

Subject Line: Please Co-Sponsor H.Res.1025 Designating April 5th as Barth Syndrome Awareness Day

Dear Representative [Insert Name]:    

On February 23rd, 2024, Rep Tonko (D NY-20) introduced H.Res.1025 to declare April 5th Barth Syndrome Awareness Day with Rep Bilirakis (R FL-12) and Rep Norman (R SC-5) as original co-sponsors, importantly making this a bipartisan resolution.  

I am a constituent who lives in your district who has been affected by Barth syndrome. [Please provide a sentence or two about ways in which Barth syndrome has affected you or your family]. As a volunteer advocate with the Barth Syndrome Foundation, I am writing you to ask you to co-sponsor H.Res.1025, recognizing April 5th as Barth Syndrome Awareness Day to increase national awareness for early diagnosis and improved health outcomes for this devastating disease.  

Barth syndrome is a multi-systemic inherited genetic disease that affects approximately 130 individuals living with Barth syndrome in the United States.  The syndrome is caused by a pathological variant in the TAFAZZIN gene, also known as G4.5 - hence April 5th (4/5) is our National Awareness Day.  Barth syndrome affects people in many ways which include skeletal muscle problems, heart function abnormalities, heart rhythm problems, neutropenia, issues with feeding, excessive fatigue, low muscle mass, mitochondrial dysfunction, muscle weakness, growth delay, and hypoglycemia.  Fatigue is often debilitating, and we know it can reduce quality of life.  There are currently no Food and Drug Administration (FDA) approved treatments for Barth syndrome.    

The FDA's recent agreement to review a New Drug Application (NDA) for elamipretide in Barth syndrome represents a significant step forward in addressing the unmet needs of patients suffering from this devastating, progressive condition.  During the protracted timeframe that it took the FDA to agree to review the NDA, approximately 10% of the people with Barth syndrome within our community have died.  

I am concerned that the tools and authority given to the FDA by Congress are being applied inconsistently by the Agency, negatively impacting patient communities such as ours that need treatment options. This creates a healthcare inequity for people living with Barth syndrome and other constituents struggling to live with life-limiting, often life-threatening, rare and ultra-rare diseases for which there are no approved therapies.  By co-sponsoring H.Res.1025, you are recognizing that people with Barth syndrome deserve to be heard and have access to promising treatments for this condition.  

You can learn more about Barth syndrome at    

Learn more about International Barth Syndrome Awareness Day at  

I appreciate your kind attention to this request and look forward to your reply.  


Your Name  

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2. Call your Representative  

A telephone number is provided on your Representative’s page.    

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