Growing Stronger

11/20/2025

I shared my experience as a rare disease caregiver and advocate in a recent podcast interview.

Take a listen. And excuse the umms and uhs. 🙂

https://open.spotify.com/episode/6D0JFu8x6XvGWElC8LL837?si=lN73Va2FSmOtVYcCXXZIJA

1 of 20 Podcast · Episode

03/28/2025

We were proud to have been part of the dedicated task force that helped develop MyAchonJourney.com — a new resource to support individuals and families navigating life with . 🧬

Whether you have a newly diagnosed child, are exploring treatment options, or are looking for guidance at different life stages, provides valuable information, expert insights, and tools to help along the way. 💙

Check out MyAchonJourney.com today! 🗺️

12/13/2024

We were honored to host individuals living with for our recent Hypochondroplasia Community Day. Hearing firsthand about their personal journeys—marked by resilience, strength, and a deep sense of community—was both enlightening and inspiring. These conversations underscore the importance of truly listening and valuing the unique perspectives within the hypochondroplasia community. They reaffirm our commitment to fostering inclusion, advancing education, and to help build a more equitable world. To our friends and advocates in the hypochondroplasia community, thank you. Your voices are invaluable, and we are deeply grateful for the opportunity to learn from your experiences.

11/19/2024

BridgeBio Pharma Announces Publication in The New England Journal of Medicine of Phase 2 PROPEL 2 Study of for Children Living with

https://bridgebio.com/news/bridgebio-pharma-announces-publication-in-the-new-england-journal-of-medicine-of-phase-2-propel-2-study-of-infigratinib-for-children-living-with-achondroplasia/

11/12/2024

BBC Essex: From serious spinal surgery to police dispatcher

A charity fundraiser who lives with a form of is celebrating five years in a job with people he says have been "really supportive since day one".

Andrew Smith, who lives with a form of dwarfism, says support from Essex Police is "like a family".

10/09/2024

Growing Stronger and The Chandler Project are collaborating on a series of videos to educate and comfort parents and families with an achondroplasia diagnosis.

We are looking for families in the San Francisco/Bay Area. Specifically:

• Families with a child (preferably female), ages 12-16, who has achondroplasia.
• Families where one parent is average height and the other has achondroplasia and who are not considering any form of treatment.

The series will delve into the parents' emotional journeys, some of the medical issues that may arise, and some of the functional challenges parents and their children might encounter.

If you are interested in participating, please reach out to [email protected]

10/07/2024

In honor of October being , hear from members of the global community on what it means to live with .

10/01/2024

October is ! 💚

At Growing Stronger, our mission is to help improve the quality of medical care for those living with by supporting research.

We are so fortunate to have companies like BridgeBio Pharma who are dedicated to amplifying voices of the dwarfism and who are leaders in research and development when it comes to improving the quality of care for the community.

09/17/2024

BridgeBio Pharma today (9/17/24) announced that the U.S. Food and Drug Administration has granted Breakthrough Therapy Designation to oral under development for children with .

Growing Stronger parent co-founder, Munira Shamim was quoted in the press release stating,
“From the outside perspective, achondroplasia may appear to affect only the height of an individual. The reality is that achondroplasia is a skeletal dysplasia which could impact aspects of health-related quality of life and functionality. As a parent of a teenager with achondroplasia and an advocate for the community, I am pleased to learn that the FDA has granted infigratinib with its Breakthrough Therapy Designation.

This action represents a significant step towards offering the first oral treatment option more readily for families living with achondroplasia. Having a wider range of therapies empowers families with greater control and choice over their healthcare decisions. We are grateful to the medical, research, and regulatory communities for recognizing and addressing the needs of families with achondroplasia, allowing them to potentially lead lives with increased confidence and improved functionality.”

To read the full release, click here: https://investor.bridgebio.com/news-releases/news-release-details/bridgebio-announces-infigratinib-first-ever-investigational

09/16/2024

New from Ascendis Pharma – Pivotal ApproaCH Trial of TransCon™ CNP (Navepegritide) Achieved Primary Objective, Demonstrated AGV Superior to Placebo

https://investors.ascendispharma.com/news-releases/news-release-details/pivotal-approach-trial-transcontm-cnp-navepegritide-achieved

Join our parent support group, Parents for TransCon CNP, to connect with parents and caregivers interested in TransCon CNP for . [This group is NOT affiliated with Ascendis Pharma]

09/11/2024

Brandeis University is doing a study about the pregnancy health care experiences of Black and Hispanic/Latinx/women with physical disabilities, including and other types of skeletal dysplasia. The study involves a 1-hour interview in English or Spanish over Zoom.

To participate, you must be between 21 and 55 years old and have had a baby in the past 10 years in the United States. Participants will be given a $50 Amazon gift card to thank them for being interviewed.

You can read more about the study here: https://heller.brandeis.edu/lurie/research/studies/physical-disabilities-race-and-pregnancy.html

To participate in the study or to learn more, contact Janelle Mills at [email protected] or 781-736-3928.

08/20/2024

As parent co-founders of , we are excited to share MyAchonJourney.com, a new educational resource designed to support individuals and families living with . Created in partnership with QED Therapeutics, a BridgeBio company, MyAchonJourney provides reliable information and practical tools from pregnancy through the first five years of a child’s life, empowering families on their journey.

As parents of a teenager living with achondroplasia, we wish a resource such as this one was available when we were navigating our son's diagnosis during his first 5 years of life.

So much love and input went into this website, and we were honored to be part of its development. Check out MyAchonJounrey.com today!