BridgeBio Introduces MyAchonJourney for Families Facing Challenges
MyAchonJourney: A New Resource for Families
BridgeBio Pharma, Inc. (Nasdaq: BBIO), a leading biopharmaceutical company dedicated to tackling genetic diseases, has announced the release of an innovative platform called MyAchonJourney. This online resource aims to provide support to individuals and families impacted by achondroplasia.
Understanding Achondroplasia
Achondroplasia is a common form of skeletal dysplasia characterized by an impaired growth of bone and cartilage. Individuals affected by achondroplasia may face various challenges, ranging from physical adaptation needs to social experiences. The launch of MyAchonJourney seeks to bridge these challenges by providing necessary information and support tailored specifically for families.
Expert Insights on MyAchonJourney
Dr. William Mackenzie, Emeritus Chairman of the Department of Orthopedic Surgery at Nemours Children’s Health, stated, "MyAchonJourney helps bridge the gap between medical care and daily life experiences. The aim of this comprehensive resource is to empower families with knowledge about the medical impacts of achondroplasia, ensuring that their children can thrive and live fulfilling lives."
The Comprehensive Nature of MyAchonJourney
The first phase of MyAchonJourney is specifically designed to provide ongoing support for families with children who have achondroplasia. It includes guidance on navigating crucial medical topics, psychosocial issues, and quality-of-life adaptations during the early years of a child's life, focusing on:
- Pregnancy and Birth: Guidance on pre-birth diagnosis, preparation for the baby’s arrival, and expectations for the initial days at home.
- Infancy and Toddlerhood (Birth-2 Years): Tips on potential medical issues, early development milestones, home adaptations, and advocacy for parents.
- Early Childhood (3-5 Years): Assistance in identifying mobility support, home and school adaptations, and psychosocial resources.
Future Developments of MyAchonJourney
Future phases of MyAchonJourney will expand to include resources for older children, teens, and young adults. This ongoing initiative reflects a strong commitment to continuously evolving the support provided for families impacted by achondroplasia.
Community Collaboration
Anne Lee Grumet, Sr. Director of Global Patient Advocacy at QED Therapeutics, expressed the commitment to fostering education and awareness beyond treatment. "We owe gratitude to our community for their collaborative efforts in creating a resource that empowers families to navigate all aspects of life with achondroplasia," she noted.
Contributors to MyAchonJourney
Special acknowledgment goes to the dedicated task force that provided invaluable insights during the development of MyAchonJourney:
- Chandler Crews, Founder, The Chandler Project
- Colleen Gioffreda, Clinical Operations Program Administrator, Johns Hopkins University
- Deborah Krakow, M.D., Professor at UCLA
- Kimberly Fine, M.S., OTR/L, Occupational Therapist
- Kristen DeAndrade, Founder, Little Legs Big Heart Foundation
- Mari Groves, M.D., Associate Professor at Johns Hopkins Hospital
- Michelle Kraus, MSW, Senior Social Worker
- Munira Shamim, J.D., Co-Founder of Growing Stronger
- William Mackenzie, M.D., Emeritus Chairman, Nemours Children’s Health
About BridgeBio Pharma
BridgeBio Pharma is credited with developing transformative medicines aimed at treating genetic diseases. Established in 2015, the company is dedicated to using its expertise in drug discovery and development to expedite the delivery of innovative therapies to patients. For further updates, the company's web platform and social media will be the go-to sources for news and developments.
Contact Information
BridgeBio Pharma, Inc. Contact:
Vikram Bali
Contact: contact@bridgebio.com
(650)-789-8220
QED Contact:
Anne Lee Grumet
Sr. Director, Global Patient Advocacy
Email: PatientAdvocacyQED@bridgebio.com
Frequently Asked Questions
1. What is MyAchonJourney?
MyAchonJourney is an online resource developed by BridgeBio Pharma to support individuals and families dealing with achondroplasia.
2. Who can benefit from MyAchonJourney?
This resource is primarily aimed at families of children with achondroplasia, but it will also evolve to support older children, teenagers, and young adults.
3. What topics are covered in the initial phase?
The initial phase includes guidance on pregnancy, birth, infancy, and early childhood developmental challenges related to achondroplasia.
4. How does BridgeBio support the community?
BridgeBio collaborates with community members to deliver educational resources that empower families in managing life with achondroplasia.
5. How can families contact BridgeBio for more information?
Families can reach out to BridgeBio at contact@bridgebio.com or by calling (650)-789-8220 for any questions regarding MyAchonJourney.
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