Best Day Ever Foundation, Inc.

09/01/2026

Do you know a local business who may want to sponsor this event for just $250? If so, please share! All donations and sponsorships from this event will benefit Best Day Ever Foundation, Inc. Sponsors will receive special shout outs/tags on social media and logo placement on the Best Day Ever Foundation website!🙂

*Please note the updated start time for this event! Hope to see you there! Please help spread the word!

Sarah Rasmussen thank you for organizing this special event!

08/20/2026

Attention Caregivers!

Please join us in downtown Indianapolis on Wednesday, August 26th, for a free luncheon designed for caregivers who want to connect, build meaningful friendships, and learn from one another in a supportive environment!

This gathering is part of our ongoing program series, Living Our BEST Lives with Duchenne, created to bring families together for encouragement, education, and community.

Whether your loved one is living with Duchenne, Becker, or another complex medical condition, we warmly invite you to join us for an afternoon of connection, conversation, and shared experiences.

Registration is required so we can plan appropriately for seating and lunch: www.bestdayeverfoundation.com/events

Heartfelt gratitude to our industry partners who, in part, help make this ongoing educational and social program series possible!

⚪️Capricor Therapeutics, Inc.
⚪️Catalyst Pharmaceuticals, Inc.
⚪️Entrada Therapeutics, Inc.
⚪️ITF Therapeutics
⚪️NS Pharma Inc.
⚪️PTC Therapeutics
⚪️Sarepta Therapeutics and
⚪️Solid Biosciences

THANK YOU!

08/06/2026

Earlier this week, PPMD, Best Day Ever Foundation, Inc., Kindness Over Muscular Dystrophy, Muscular Dystrophy Association, MDFF Indiana, and Team Joseph held a town hall webinar following the July 29, 2026, FDA Advisory Committee meeting for Deramiocel.

We reviewed the committee’s discussion and vote, offered insight into what the recommendation means (and what it doesn’t), discussed next steps as we approach the FDA’s August 22, 2026, PDUFA action date, and answered questions from the community.

Watch the recording now: https://www.parentprojectmd.org/aiovg_videos/town-hall-deramiocel-fda-advisory-committee-meeting-update/

07/18/2026

Important Update!

The July 29 FDA Advisory Committee meeting for deramiocel has officially been changed to an in-person meeting, while a virtual option will still be available for those who wish to watch remotely or provide Open Public Hearing (OPH) testimony virtually. This means members of our Duchenne community now have the opportunity to be in the room where this important discussion will take place at the FDA White Oak Campus in Silver Springs, Maryland.

Important Info:

🎤 If you requested to speak during the Open Public Hearing (OPH), you should have received notification from the FDA yesterday regarding your request.

⏰ Please note that the meeting time has also been updated and is now scheduled for 9:30 a.m. – 4:50 p.m. (ET).

📧 An email has been sent to everyone who registered for the Washington, D.C. Educational Watch Party Experience, presented in partnership by Best Day Ever Foundation, Inc. and Kindness Over Muscular Dystrophy, with updated information about what this change means for our plans. If you have been approved by the FDA to speak during the OPH but did not previously register for our Washington, D.C. Educational Watch Party Experience and would like to attend the meeting in person, please reach out to us as soon as possible. We would love to see if we can help you be part of this historic day and gather in person with others in the DMD community the night before the meeting.

📝 There is still time to submit written comments to the FDA for consideration. Every voice matters, and we encourage members of our Duchenne community to share their perspectives.

You can find more information about the meeting and instructions for submitting written comments below. Comments received on or before July 20, 2026, will be provided to the committee.

https://www.fda.gov/advisory-committees/advisory-committee-calendar/cellular-tissue-and-gene-therapies-advisory-committee-july-29-2026-meeting-announcement-updated

We look forward to standing together with our Duchenne community on this incredibly important day.

We truly are - BEST TOGETHER!💙

This is the main page for the CBER Cellular, Tissue, and Gene Therapies Advisory Committee (CTGTAC) July 29, 2026 announcement and meeting materials.

07/17/2026

WE ARE OFFICIALLY FULL! 💙

The response to our FDA Advisory Committee Watch Party Experience has been nothing short of incredible.

We are thrilled to share that more than 100 members of the Duchenne community are now registered to join us in Washington, D.C., and our event is officially fully booked. Registration is now closed.

From the very beginning, our vision was to create a meaningful opportunity for families to come together during this historic moment for the Duchenne community. Thanks to the generosity of our supporters and the incredible partnership between Kindness Over Muscular Dystrophy and Best Day Ever Foundation, that vision has become a reality.

On July 29, families from across the country will gather side by side to watch the FDA Advisory Committee meeting on deramiocel together. Whether the meeting is held virtually or in person, we believe there is tremendous power in coming together as one community to learn, support one another, and experience this important milestone together.

To every family who registered, we can’t wait to welcome you to Washington, D.C.!

Thank you to everyone who helped make this possible. Your generosity is bringing families together, creating lifelong connections, and reminding our community that no one has to walk this journey alone.

Together, we are stronger.
Together, we are hopeful.
We are BEST Together. 💙

07/11/2026

FDA Advisory Committee Watch Party Experience!

Washington, D.C. | July 28–30, 2026

Come experience this historic moment alongside other Duchenne families as we gather in Washington, D.C. to watch the FDA Advisory Committee meeting together.

Hosted by Kindness Over Muscular Dystrophy and Best Day Ever Foundation, Inc.

KOMD is excited to partner with Best Day Ever Foundation to offer a one-of-a-kind educational and social experience for families who have a child living with Duchenne muscular dystrophy.

On July 29, 2026, the U.S. Food and Drug Administration (FDA) will convene an Advisory Committee meeting to discuss deramiocel, a potential new therapy for Duchenne muscular dystrophy. While the meeting is currently scheduled to be held virtually, we want to provide our community with the opportunity to come together in person for a special watch party where families can learn more about the FDA review process, experience this important milestone together, and connect with others who understand the Duchenne journey.

Families selected for this experience will enjoy a FREE two-night hotel stay at the beautiful Embassy Suites by Hilton Washington D.C. – Convention Center, ideally located in the heart of downtown Washington, D.C. The hotel is within walking distance of many of the city's most popular attractions, including the White House, Smithsonian museums, the Walter E. Washington Convention Center, Capital One Arena, and countless restaurants and historic landmarks.

This complimentary experience includes:

FREE two-night hotel suite at Embassy Suites by Hilton Washington D.C. – Convention Center (July 28–30, 2026)
Complimentary made-to-order breakfast each morning
Exclusive FDA Advisory Committee Watch Party from 10:00 a.m.–4:00 p.m. on July 29 in a private meeting room
Complimentary lunch during the watch party
Embassy Suites' signature Evening Reception on both evenings, featuring complimentary beverages and light appetizers
Opportunities to connect with other families living with Duchenne from across the country
Free time to explore Washington, D.C.'s world-renowned museums, monuments, restaurants, and other attractions
Eligibility

This experience is reserved for families who have a child living with Duchenne muscular dystrophy. Due to limited capacity, priority will be given to immediate family members traveling with their child living with Duchenne.

Each selected family will receive one complimentary hotel suite for a FREE two-night stay (July 28–30, 2026). Each suite includes two queen beds and a separate living area with a pull-out sofa, providing comfortable sleeping accommodations for most families. To allow as many families as possible to participate, we are only able to provide one hotel suite per family.

Families are responsible for arranging their own transportation unless they are awarded a travel scholarship.

Availability

Space for the FREE two-night hotel stay is limited. While hotel accommodations are limited, our sincere hope is to provide this experience for every Duchenne family who wants to join us.

If all hotel suites have been claimed, we encourage families who are able to drive in for the day or stay at another nearby hotel to still join us for the FDA Advisory Committee Watch Party on July 29. We hope to welcome as many members of the Duchenne community as possible for this important day of education, connection, and hope.

A limited number of travel scholarships are also available for families who need assistance with travel expenses. Families interested in applying for a travel scholarship may submit a request through the Kindness Over Muscular Dystrophy website. Travel scholarship awards are limited and will be distributed based on available funding.

How to Express Your Interest

To be considered for the FREE two-night hotel stay and/or a travel scholarship, please complete the Interest Form on the Kindness Over Muscular Dystrophy website.

Interest Form: www.kindnessovermd.org

Deadline to submit your Interest Form: Wednesday, July 15, 2026.

We encourage you to submit your interest as soon as possible, as hotel accommodations and travel scholarship funding are limited.

Whether you are following the progress of deramiocel, interested in learning more about the FDA drug review process, or simply looking to spend time with other Duchenne families, we hope you'll join us for this memorable experience.

No matter where you are on your Duchenne journey, we hope you'll join us as we come together to learn, encourage one another, and witness an important moment in Duchenne history. Because when our community comes together, hope grows stronger.

We are BEST Together. 💙

07/10/2026

FDA Advisory Committee Watch Party Experience
Washington, D.C. | July 28–30, 2026

Come experience this historic moment alongside other Duchenne families as we gather in Washington, D.C. to watch the FDA Advisory Committee meeting together.

Hosted by Best Day Ever Foundation in partnership with Kindness Over Muscular Dystrophy

Best Day Ever Foundation is excited to partner with Kindness Over Muscular Dystrophy to offer a one-of-a-kind educational and social experience for families who have a child living with Duchenne muscular dystrophy.

On July 29, 2026, the U.S. Food and Drug Administration (FDA) will convene an Advisory Committee meeting to discuss deramiocel, a potential new therapy for Duchenne muscular dystrophy. While the meeting is currently scheduled to be held virtually, we want to provide our community with the opportunity to come together in person for a special watch party where families can learn more about the FDA review process, experience this important milestone together, and connect with others who understand the Duchenne journey.

Families selected for this experience will enjoy a FREE two-night hotel stay at the beautiful Embassy Suites by Hilton Washington D.C. – Convention Center, ideally located in the heart of downtown Washington, D.C. The hotel is within walking distance of many of the city's most popular attractions, including the White House, Smithsonian museums, the Walter E. Washington Convention Center, Capital One Arena, and countless restaurants and historic landmarks.

This complimentary experience includes:
FREE two-night hotel suite at Embassy Suites by Hilton Washington D.C. – Convention Center (July 28–30, 2026)
Complimentary made-to-order breakfast each morning
Exclusive FDA Advisory Committee Watch Party from 10:00 a.m.–4:00 p.m. on July 29 in a private meeting room
Complimentary lunch during the watch party
Embassy Suites' signature Evening Reception on both evenings, featuring complimentary beverages and light appetizers
Opportunities to connect with other families living with Duchenne from across the country
Free time to explore Washington, D.C.'s world-renowned museums, monuments, restaurants, and other attractions

Eligibility
This experience is reserved for families who have a child living with Duchenne muscular dystrophy. Due to limited capacity, priority will be given to immediate family members traveling with their child living with Duchenne.

Each selected family will receive one complimentary hotel suite for a FREE two-night stay (July 28–30, 2026). Each suite includes two double beds and a separate living area with a pull-out sofa, providing comfortable sleeping accommodations for most families. To allow as many families as possible to participate, we are only able to provide one hotel suite per family.

Families are responsible for arranging their own transportation unless they are awarded a travel scholarship.

Availability
Space for the FREE two-night hotel stay is limited. While hotel accommodations are limited, our sincere hope is to provide this experience for every Duchenne family who wants to join us.

If all hotel suites have been claimed, we encourage families who are able to drive in for the day or stay at another nearby hotel to still join us for the FDA Advisory Committee Watch Party on July 29. We hope to welcome as many members of the Duchenne community as possible for this important day of education, connection, and hope.

A limited number of travel scholarships are also available for families who need assistance with travel expenses. Families interested in applying for a travel scholarship may submit a request through the Kindness Over Muscular Dystrophy website. Travel scholarship awards are limited and will be distributed based on available funding.

How to Express Your Interest
To be considered for the FREE two-night hotel stay and/or a travel scholarship, please complete the Interest Form on the Kindness Over Muscular Dystrophy website.

Interest Form: www.kindnessovermd.org

Deadline to submit your Interest Form: Wednesday, July 15, 2026.

We encourage you to submit your interest as soon as possible, as hotel accommodations and travel scholarship funding are limited.

Whether you are following the progress of deramiocel, interested in learning more about the FDA drug review process, or simply looking to spend time with other Duchenne families, we hope you'll join us for this memorable experience.

No matter where you are on your Duchenne journey, we hope you'll join us as we come together to learn, encourage one another, and witness an important moment in Duchenne history. Because when our community comes together, hope grows stronger.

We are BEST Together. 💙

07/09/2026

Registration is open for our annual School Resources Luncheon!
Maggiano's Little Italy - Northside of Indianapolis, IN
Saturday, August 15, 2026
11:30 AM - 1:30 PM

Join us for one of our most informative events of the year as we gather for lunch and an engaging discussion about navigating school and educational supports for students living with Duchenne muscular dystrophy.

Topics will include:

🔵Understanding IEPs and 504 Plans

🔵Indiana's Education Scholarship Account (ESA) Program

🔵Available school accommodations and supports

🔵Tips for building strong partnerships with your child's educational team

🔵And much more!

We are also excited to welcome a special guest speaker who served for many years as a Special Education Director in the Indianapolis area. She will share valuable insights, practical advice, and answer questions to help families better advocate for their children.

This event is open to the entire family, and we strongly encourage parents to invite their child's teachers, aides or other members of their school support team to attend. We believe that when families and educators learn together, we can build stronger partnerships that help every child thrive.

Advance registration is required for this event. Please register at www.bestdayeverfoundation.com/events

07/08/2026

As we move into the second half of 2026, we want to take time this month to highlight some of our incredible industry partners and supporters of our signature program, Living Our Best Lives with Duchenne.

Today, we are recognizing PTC Therapeutics for their generous support of this program. Not only have they provided funding through an overall program sponsorship, but they also consistently show up before, during, and after our events to lend a helping hand wherever it's needed. They have given back so much to the Duchenne community over the years, and today we simply want to say, THANK YOU! 💙

P.S. Save the date for two important events happening in Indianapolis during the second half of this year!

🔵Saturday, August 15 – Join us for our annual School Resources event, where we'll provide a complimentary lunch at Maggiano's Little Italy in Indianapolis while sharing valuable information and resources to help families prepare for the school year.

🔵Saturday, November 21 – We'll host our annual Best Friendsgiving Ever at the Local 416 Firefighters Union Hall in downtown Indianapolis. This is one of our favorite events of the year, bringing our Duchenne families together while welcoming our industry sponsors for an evening of gratitude, reflection, hope, education, and a peaceful start to the holiday season.

Be on the lookout for additional events throughout the rest of the year, including caregiver luncheons, digital art classes, newly diagnosed family Zoom meetings, and more. We'll be sharing details on our website and social media as we finish 2026 strong—together! 💙

www.bestdayeverfoundation.com/events

Jul 9 1:00 PM13:00 Sisters of Duchenne – Virtual Connection & Conversation 💛 Thursday, July 9, 2026 1:00 PM 1:45 PM 13:00 13:45 Google Calendar ICS Sisters of Duchenne – Virtual Connection & Conversation 💛Join us for a special Sisters of Duchenne Zoom gathering - a space created just...

07/07/2026

The FDA has scheduled an Advisory Committee meeting for July 29, 2026 to review Deramiocel, Capricor’s investigational cell therapy for Duchenne muscular dystrophy. The meeting will be held virtually, and a live stream will be...