Kinley and Kennedy are two sisters, and their father, Kyle, has been working in ALTEN for 16 years. In the summer of 2020, both girls were diagnosed with GM1 gangliosidosis, a rare and devastating disease that gradually strips its victims of their ability to walk, talk, eat, and even smile—before ultimately claiming their lives.

At present, their condition is considered "stable." They are still able to walk independently and speak. Still, without effective treatment, doctors predict they may not live beyond their twenties.

About GM1 Gangliosidosis

01 What is GM1？

GM1 Gangliosidosis is a rare genetic disorder that causes harmful substances to build up in the nerve cells of the brain and spinal cord. It’s classified as a lysosomal storage disease. As the disease progresses, it severely impacts motor skills and cognitive function and can lead to seizures, muscle weakness, and loss of coordination.

02 What is the incidence rate?  

GM1 affects approximately 1 in 100,000 to 1 in 300,000 people worldwide. In addition, there are over 7,000 known rare diseases, which together affect around 10% of the global population. Despite being classified as "rare," these diseases are more common than most people realize. In China alone, there are over 20 million people living with rare diseases, with more than 200,000 new diagnoses each year. So, the saying "rare diseases are rare" no longer holds true in many parts of the world.

03 Is there hope for the kids?  

At present, there is no approved treatment or cure for GM1. However, several pharmaceutical companies, universities, and research institutions are exploring potential therapies, including substrate inhibition and gene therapy trials.

While clinical trials and medical research hold promise, they require significant funding to move forward, and treatment slots are limited. In an effort to support this important research, a group of parents of children with GM1 founded the CURE GM1 Foundation, which funds direct research on GM1 gangliosidosis. A month ago, Kinley and Kennedy began participating in gene therapy trials in the hopes of slowing the progression of the disease, improving their quality of life, and extending their lifespan.

What We’ve Done for Rare Disease

Fundraising: Racing Against Time to Help!

To support Kinley and Kennedy, as well as others facing similar challenges, ALTEN China recently held a rare disease awareness campaign and fundraising event. After hearing the sisters" story and learning more about GM1 and other rare diseases, many of our colleagues were moved to act and generously made donations. The total amount raised will be donated to the CURE GM1 Foundation to fund ongoing research and treatment efforts.

Receipt from Cure GM1 Foundation

ALTEN would like to express heartfelt thanks to every ALTENer who contributed. Every donation brings warmth and hope not only to Kinley and Kennedy but also to others facing rare diseases. Your kindness is helping to bring courage and strength to these families as they fight for a brighter future.

Spreading Kindness: 

Bringing Attention to the "Rare"

International Rare Disease Day is observed every year on the last day of February. On February 29, 2008, EURORDIS (the European Organisation for Rare Diseases) launched the first International Rare Disease Day. Since then, it has been spread worldwide, helping to raise awareness about rare diseases through various events and initiatives.

ALTEN, with nearly 57,000 employees around the world, cares deeply about the well-being of our employees and their families. We believe in the importance of human connection and social responsibility. 

We remain committed to supporting Kinley and Kennedy, as well as raising awareness about rare diseases in the broader community. Through our actions, we aim to give rare disease patients the hope and empowerment they need to continue their fight.

If you are willing to help, you could contact info@altenchina.com to learn more.