October 2021 | Baltimore’s Child Magazine – ‘Growing Up’ In Baltimore
Despite being born and raised in Little Rock, Arkansas, I like to claim Baltimore as the city where I grew up because it is…literally
Chandler Crews in the October 2021 issue of Baltimore’s Child Magazine
August 16, 2021 | Future Rare Diseases – Vosoritide treatment accelerates bone growth in children with achondroplasia
Chandler Crews, was born with achondroplasia and is the founder and president of The Chandler Project, a nonprofit patient-focused organization dedicated to providing education and resources for those affected by achondroplasia talks with me about her decision to have limb lengthening surgery.
TALK! with AUDREY
June 2021 | ACMG Annual Clinics Genetics Meeting – Key Measurement Concepts and Appropriate Clinical Outcome Assessments in Pediatric Achondroplasia Clinical Trials
Author(s): Natalie Aldhouse, MSc (Presenting Author); Helen Kitchen, MSc (Co-Author); Chloe Johnson, MSc (Co-Author); Chris Marshall, MSc (Co-Author); Hannah Pegram, BSc (Co-Author); Sheryl Pease, MBA PMP (Co-Author); Sam Collins, MD (Co-Author); Christine Baker, MPH (Co-Author); Katherine Beaverson, MS (Co-Author); Chandler Crews, BA AS (Co-Author); Kathleen Wyrwich, PhD (Co-Author) Filter by Topic: Clinical genetics and therapeutics Poster ID: eP252
Objectives: This study aimed to identify fit-for-purpose clinical outcome assessments (COA) to evaluate physical function and well-being in pediatric achondroplasia clinical trials.
Methods: A literature review was conducted to develop a conceptual model (CM) of key measurement concepts related to achondroplasia, and identify COAs evaluating these CM concepts through patient/caregiver report. Qualitative interviews lasting 90 minutes were conducted in the US with pediatric patients with achondroplasia and/or their caregivers. Interviews utilized concept elicitation methodology to explore patient experiences and caregivers’ hypothetical perspectives of successful treatment outcomes. Cognitive debriefing methodology explored relevance and understanding of selected COAs.
Results: Interviews (N=36) were conducted with caregivers of patients age 0-2 years (n=8) and 3-7 years (n=7) and patient/caregiver dyads with patients age 8-11 years (n=15) and 12-17 years (n=6). Patients/caregivers identified pain, short stature, impacts on physical functioning (e.g. reach), and impacts on well-being (e.g. negative attention/comments) as key bothersome aspects of achondroplasia. Caregivers considered an increase in height (n=9/14, 64%) and an improvement in limb proportion (n=11/14, 71%) as successful treatment outcomes. The Child Health Assessment Questionnaire (CHAQ) and Quality of Life in Short Stature Youth (QoLISSY Brief) were cognitively debriefed. CHAQ items evaluating activities, reaching, and hygiene were most relevant. QOLISSY Brief items evaluating reaching, height bother, being treated differently, and height preventing from doing things others could were most relevant. Instructions, item wording, response scales/options and recall period were well understood by caregivers and patients age 12-17. Some patients age 8-11 had difficulty reading, understanding, or required caregiver input. Patient/caregiver feedback informed minor amendments to CHAQ wording and the addition of a recall period to the QOLISSY Brief.
Conclusion: The CHAQ and QOLISSY Brief are relevant and appropriate measures of physical function and emotional/social well-being in pediatric achondroplasia; patient-report is recommended for age 12-17 years and caregiver-report is recommended for age 0-11 years.
Chandler Crews was born with achondroplasia, a serious, progressive and lifelong condition that is the most common form of dwarfism. Beyond a short stature, people with achondroplasia can experience serious health complications, including foramen magnum compression, sleep apnea, bowed legs, mid-face hypoplasia, permanent sway of the lower back, spinal stenosis and recurrent ear infections. Some of these complications can result in the need for invasive surgeries, such as spinal cord decompression. Currently limb lengthening surgery is the only treatment option available. Chandler underwent the surgery at 16 years old, greatly improving function and mobility issues. The 3rd Annual Achondroplasia Research Conference takes place in Baltimore July 2-3. Learn more here.
Midday Maryland
June 18, 2021 | KGUN9 – Tucson Morning Blend
A life-changing limb lengthening surgery for women born with Dwarfism – video.
Achondroplasia is a serious, progressive and lifelong condition that is the most common form of dwarfism. At the age of 16, Chandler Crews made a choice to undergo a number of limb lengthening surgeries that – over the span of four years – has changed her life. She went from standing at 3’10” to 4’11”.
After her experience she founded The Chandler Project, a non-profit organization dedicated to connecting people with Achondroplasia to resources and community.
Chandler talks about how her function and mobility greatly improved, along with her independence. She also talks about The Chandler Project’s 3rd annual Achondroplasia research conference, that will be held in-person and virtually on July 2nd and 3rd.
Everyone is invited, patients, caregivers, researchers and physicians, to come together and learn about the latest research and surgical treatment options.
For more information visit: www.thechandlerproject.org
June 17, 2021 | WTKR – Coast Live
A treatment option for those with achondroplasia on Coast Live – video.
Chandler Crews was born with achondroplasia, a serious, progressive, and lifelong condition that is the most common form of dwarfism. In 2010 at the age of 16, she made the choice to undergo a series of limb lengthening surgeries. In a span of just four years, Chandler went from standing at 3’10” to 4’11. She joins us to talk about this treatment and The Chandler Project, a non-profit organization dedicated to connecting people with achondroplasia to resources and community. For more information visit thechandlerproject.org.
February, 2021 | BioMarin Pharmaceutical, Inc. – Rare Disease Day Event
February 26, 2021 | WBFF Baltimore – Dr. Shawn Standard and Chandler Crews discuss rare diseases in an effort to help raise awareness.
October 2020 | MEGA TV – Buena Vida
August 20, 2020 | BioMarin Submits New Drug Application to U.S. Food and Drug Administration for Vosoritide to Treat Children with Achondroplasia
“This regulatory submission brings our community closer to accessing the first therapeutic choice for children and families,” said Chandler Crews, Founder of The Chandler Project. “A well-researched drug treatment choice has the potential to be an important resource for the community and to increase our understanding of the scientific underpinnings of achondroplasia.”
BioMarin Pharmaceutical, Inc.
I was touched without my consent and forced to apologize. I was so naive.’: Woman with Achondroplasia urges ‘I’m not a little person, I’m not a dwarf, I’m just Chandler’
Love What Matters
Photo: Ahmin Haider (center) and his brother Belal Haider (right) work on their homework with their cousin Zayyan Agboatwalla (left) at the Haiders’ home in Saratoga, Calif. Ahmin was born with achondroplasia, the most common cause of dwarfism, and he’s enrolled in a clinical trial of a treatment that might make him taller and prevent medical complications. 📸: Laura Morton for STAT
“I’ll never have that,” she said. “I’ve always seen my having dwarfism as a medical diagnosis, which is what it is. So when people would tell me, ‘You’re just short’ — well, if that’s the case, then why am I constantly having to go to the doctor to get my ears checked? To examine my spine?”
Chandler Crews to STAT News when asked about “dwarf pride.”
November 2018 | Originally posted to RadioMD – My-Not-So-Short-Life: Why Limb Lengthening Surgery Was Right For Me
“Like many with dwarfism, I surprised my parents when I was born. Only one in 15,000 to one in 40,000 live births result in a person with achondroplasia, the most common form of dwarfism.”
Chandler Crews to RadioMD
UPDATE: November 19, 2021 | FDA Approves First Drug to Improve Growth in Children with Most Common Form of Dwarfism
Chandler Crews, born with the most common type of dwarfism, undergoes several procedures to lengthen her bones. This short documentary shows the strength and perseverance of a person who uncontrollably faced obstacles since their childhood and how they rose above through faith in self and science.
Carly Machen
July 30, 2014 | NBC 7 San Diego – Limb-Lengthening Surgery Creates Controversy
Some people with dwarfism are turning to a controversial alternative: a surgery that can make them more than foot taller. NBC 7’s Mark Mullen shares one patient’s journey, including the criticism she has received from her own community.
NBC 7 San Diego
“Just a year ago, I was six inches shorter,” Crews said. “I couldn’t sit with my feet on the ground. Can you imagine what that was like?”
The Baltimore Sun
Chandler Crews: “One inch every two weeks is how much I’d grow.”
KATV
