Our Mission
Growing Stronger's mission is to improve the quality of medical care for people through supporting research. We raise nonprofit donations that are granted to researchers focused on dwarfism. Currently, we are committed to supporting two world-leading researchers. You can learn more about them and their research below. Donations are tax deductible and collected by a 501(c)3 account maintained at Fidelity Charitable.
Our Story
On July 21, 2008, Amer and Munira Haider, of the San Francisco Bay Area, were blessed with Ahmin, the second of their three children. When Ahmin was 9 months old his pediatrician expressed strong suspicion, later confirmed by geneticists at Lucile Packard Children’s Hospital, that he was a little person with achondroplasia. At Ahmin's 9-month well visit, his head circumference was so big that it could not be plotted on the chart for typical children his age, while his length was so short it also could not be plotted. Since achondroplasia is an orthopedic condition affecting almost the entire body, Ahmin’s health has had to be actively managed. With regular occupational and physical therapy throughout his childhood, Ahmin has tried to keep up with his peers in his gross and fine motor skills in which he experiences a 6-month to 1-year delay. Initially, Ahmin’s spine was curving outwards (kyphosis), and when he learned to walk it began to curve inwards (lordosis). Achondroplasia also affects Ahmin’s head and face (cario-facial features), toncils and adenoids (lymphatic system). Ahmin’s ear, nose and throat surgeon removed his adenoids when he was 9-months-old so the lack of oxygenation during his sleep (sleep apnea) could be reduced. At 2.5-years-old, Ahmin had tubes placed surgically in his ears so that his middle ear tubes (eutachian tubes) would remain drained; this put a stop to Ahmin’s chronic ear infections and helped him hear better. With MRIs and CT scans, Ahmin’s neurosurgeon keeps a close eye on where his brain stem meets the spine (foramen magnum area) to make sure that his spinal chord is not getting compressed. Ahmin’s orthopedist keeps a close eye on the bowing in his legs to catch any worsening conditions over time. As Ahmin grows older he may also experience compression where his spine meets the hips (spinal stenosis), a condition which, again, can be corrected surgically. In summary, Ahmin is a candidate for four major surgical procedures in his lifetime (with the possibility that each procedure may be done more than once). These procedures would redress his:
1. foramen magnum stenosis (brains stem compression)
2. spinal stenosis (pressure built around spine)
3. lordosis (hip swing owing to outward curvature of spine)
4. bowed legs
Despite all these challenges, Ahmin is energetic, bright-eyed and mischievous, keeping his mom and other caregivers on their toes all day long. He switches back and forth between English, Urdu and Chinese with ease. Amer and Munira envision a life for Ahmin in which he is physically independent and experiences the least possible orthopedic challenges that almost all little people are faced with through their lifetime. In Dec. 2010, the Hader's reached out to Dr. William Horton at Shriners Hospital (Portland, OR) and Dr. William Wilcox at Cedar Sinai (Los Angeles, CA) to explore possibilities of drug development to minimize Ahmin’s chances of surgery. The doctors apprised the couple of exciting developments in their respective labs centered around drug therapy on the mutated FGFR3 gene. Financial resources would help accelerate efforts towards the development of a drug remedy. A tiny ray of hope is enough to get any parents of a child excited and here the doctors were expressing a lot of optimism about finding ways of helping out little people. Amer and Munira got on board with the doctors, committing to do the necessary fund-raising to further their research. The couple established the Growing Stronger Research Fund (GRF) from personal funds and from outreach to family and friends. With their organization, Growing Stronger, they hope to galvanize their efforts to fundraise, and to ensure that the momentum to finding a drug remedy is kept up and remains on track. In the process of fundraising they have been touched by the generosity of many family members, friends and strangers. They hope that anyone who gets to know Growing Stronger will connect with their cause and give generously.
1. foramen magnum stenosis (brains stem compression)
2. spinal stenosis (pressure built around spine)
3. lordosis (hip swing owing to outward curvature of spine)
4. bowed legs
Despite all these challenges, Ahmin is energetic, bright-eyed and mischievous, keeping his mom and other caregivers on their toes all day long. He switches back and forth between English, Urdu and Chinese with ease. Amer and Munira envision a life for Ahmin in which he is physically independent and experiences the least possible orthopedic challenges that almost all little people are faced with through their lifetime. In Dec. 2010, the Hader's reached out to Dr. William Horton at Shriners Hospital (Portland, OR) and Dr. William Wilcox at Cedar Sinai (Los Angeles, CA) to explore possibilities of drug development to minimize Ahmin’s chances of surgery. The doctors apprised the couple of exciting developments in their respective labs centered around drug therapy on the mutated FGFR3 gene. Financial resources would help accelerate efforts towards the development of a drug remedy. A tiny ray of hope is enough to get any parents of a child excited and here the doctors were expressing a lot of optimism about finding ways of helping out little people. Amer and Munira got on board with the doctors, committing to do the necessary fund-raising to further their research. The couple established the Growing Stronger Research Fund (GRF) from personal funds and from outreach to family and friends. With their organization, Growing Stronger, they hope to galvanize their efforts to fundraise, and to ensure that the momentum to finding a drug remedy is kept up and remains on track. In the process of fundraising they have been touched by the generosity of many family members, friends and strangers. They hope that anyone who gets to know Growing Stronger will connect with their cause and give generously.
Funded Researchers
Dr. Michael Bober
Dr. Michael B. Bober is a pediatric geneticist, director of Nemours’ Skeletal Dysplasia Program and an authority on skeletal dysplasias, brittle bone disease, primordial dwarfism and other genetic disorders of the skeleton. He is a frequent guest lecturer, accomplished author and consultant for numerous television networks, here and abroad.
Dr. Sadaf Naz
Dr. Sadaf Naz is Associate Professor of Molecular Genetics at the School of Biological Sciences, University of the Punjab, Pakistan. She specializes in the genetics of hearing and movement disorders.
Read more about Dr. Bober's and Dr. Naz's supported research.
Read more about Dr. Bober's and Dr. Naz's supported research.
Skeletal Dysplasia Management Consortium
Growing Stronger is a sponsor of this year's Skeletal Dysplasia Management Consortium (SDMC) annual meeting. The SDMC's mandate is to improve the lives of people with skeletal dysplasia by optimizing clinical management. The SDMC brings together expert physicians in treating patients with skeletal dysplasia, providing an international, multidisciplinary forum for scientific exchange and education in the expanding field in the clinical care of patients with skeletal dysplasias. Learn more about SDMC.
Growing Stronger is a sponsor of this year's Skeletal Dysplasia Management Consortium (SDMC) annual meeting. The SDMC's mandate is to improve the lives of people with skeletal dysplasia by optimizing clinical management. The SDMC brings together expert physicians in treating patients with skeletal dysplasia, providing an international, multidisciplinary forum for scientific exchange and education in the expanding field in the clinical care of patients with skeletal dysplasias. Learn more about SDMC.
Scientific Advisory Committee
The Scientific Advisory Committee, composed of world-class scientists and physicians, is responsible for periodically commenting on research conducted with Growing Stronger funding, making sure that the funds are directed towards meaningful, goal-oriented research. Members of the committee issue a report every six months and meet over the phone once every quarter and in person once every year. Their reports are available under the blogs section of the websiteWe are in the process of building the Scientific Advisory Committee. Currently Dr. Michael Ain has agreed to join the committee. Dr. Ain is at the Johns Hopkins Hospital, Baltimore, MD. Dr Ain maintains research interest in Achondroplasia, Pediatric Trauma, Pediatric
Spinal Deformities, Skeletal Dysplasia, Hip Dysplasia, Pediatric Spinal Deformities/Scoliosis
Founding Donors
We are grateful for the generous donations from our founding donors. We are continuously raising more funds to reach our $10M/year goal. The list of founding donors can be found by clicking here.
Reporting and Transparency
Growing Stronger adheres to the highest standards of transparency and responsibility in conducting their affairs. The managing team of Growing Stronger issues a bi-annual report to donors apprising them of fund-raising status and of progress made.
As of the Nov 2011: Growing Stronger has $150K/year for 3-years pledged and $105K collected. Monthly payments to Dr. Horton’s lab started in Aug 2011. Monthly payments to Dr. Wilcox’s lab will start in March 2012. All donations made to the ARF are 100% spent directly on supported labs. All supporting expenses of Growing Stronger like website maintenance, travel, meetings and meals are paid by the managing team.
As of June 2013: We are pleased to announce that we completed the first full year of support of Dr. Horton's lab and Dr. Jyoti's work. Dr. Jyoti has received a grant based on her research and continues her important research without support from Growing Stronger. We are pleased to mention that we are now providing partial support to a Greg Lunstrum, researcher in Dr. Horton's lab. You can see progress from Dr. Horton's lab on their blog on the website. We have some changes to report with Dr. Wilcox's lab. Dr. Pavel has left Cedars in the beginning of April 2013. He is no longer supported by Growing Stronger. We are communicating with Dr. Pavel to evaluate how we can continue to support his important FGFR3 research. We are working with Dr. Wilcox to finalize our first year support and in the process of evaluating our continued support.
