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)
- Find your Member by entering your contact information in this Phone2Action form
- Click Find Legislators
- Select the name of the Legislator
- Select the way that you wish to contact the Member
- Website which leads to their email form
- Tweet
- 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.209 Designating April 5th, 2025 as Barth Syndrome Awareness Day
Dear Representative [Insert Name]:
On March 10th, 2025, Rep Tonko (D NY-20) introduced H.Res. 209 designating April 5th, 2025 as Barth Syndrome Awareness Day with Rep Bilirakis (R FL-12), Rep, Doris Matsui (CA-07), Rep Norman (R SC-5), Rep. Lori Trahan (MA-03), Rep. Joe Wilson (SC-02) and Rep. Jake Auchincloss (MA-04) as original co-sponsors, importantly making this a bipartisan resolution.
I am a constituent who lives in [Your City], [Your State] and a constituent in your district. [How are you related to the person who has Barth syndrome]. I am writing to ask you to co-sponsor H.Res. 209, designating April 5th, 2025, 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 140 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 agreement to review a New Drug Application (NDA) for elamipretide in Barth syndrome on April 3rd, 2024, represented 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, and more recently an extension of the PDUFA date from January 29th, 2025, to April 29th, 2025, approximately 18% Barth individuals in the US have died and 12% in the US have required a heart transplant. By the April 29th, 2025, PDUFA date it will have taken over a year for the review process. This, for a drug that received Priority Review, Fast Track and Orphan Disease designation from the FDA which should have expedited the review process.
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. 209, you are recognizing that people with Barth syndrome deserve to be heard and have access to promising treatments for this condition.
[Expand upon why this request important to you?]
You can learn more about Barth syndrome at www.barthsyndrome.org
I appreciate your kind attention to this request and look forward to your reply.
Sincerely,
Your Name
Your Address
Your email address
2. Call your Representative
A telephone number is provided on your Representative’s page.
