Dusty is 20-years-old and has Duchenne. Dusty lives with his family in Newport Beach, California. He graduated from Corona del Mar High School and is starting undergraduate courses at a community college. Dusty serves on the board of Coalition Duchenne and has worked to raise awareness for Duchenne and funding for research. He is participating in the groundbreaking FDA trial of Ataluren at University of California, Davis. Earlier, the Dusty Brandom Fellowship funded doctoral students investigating oligonucleotides at the University of Western Australia – research that is being developed by different companies and is now proceeding into trials.
In 2011 Dusty met with President Barack Obama in the White House and spoke to him about Duchenne and his family’s cause to raise awareness and funding. The President said that he carries Dusty’s story in his heart. Dusty is known for his positive outlook on life, and his great smile.
When Catherine’s son, Dusty, was diagnosed with Duchenne 14 years ago, it was a catalyst for her to live in the present moment and to live with gratitude. Catherine is Malaysian/English. Her father is part Sri Lankan and part Kadazan, and her mother is English. Catherine was raised in Kota Kinabalu, in the Malaysian state of Sabah, on the island of Borneo. She is proud to say she is Sabahan, and although she has lived in Australia, England, Canada, and currently the USA, she still calls Sabah home.
Catherine has undergraduate degrees in Asian History and Photojournalism, and a Masters in Counseling. Catherine is the founder of Coalition Duchenne, a non-profit organization that raises global awareness and funding to find treatments and one day a cure for Duchenne muscular dystrophy.
Catherine is founder of Present Moment Yogi Productions which is committed to making a difference in the world with inspirational messaging through the medium of film and documentary.
She enjoys hiking, writing, travel, teaching yoga and spending time with her family.
Azmi is a 14-year-old who has Duchenne. He lives with his family in Menggatal near Kota Kinabalu in Malaysian Borneo. Azmi is one of six siblings, and his family welcomed the Dusty’s Trail film crew to their home. Azmi played an important role in flagging off the 2012 Expedition Mt Kinabalu with other dignitaries.
Datuk Masidi is Minister of Tourism, Culture and Environment in the Malaysian state of Sabah, Borneo. Known as ‘Minister on the Move’, he has established himself as a dynamic advocate for the people of Sabah. Datuk Masidi has been supportive of Coalition Duchenne and Expedition Mt Kinabalu since its inception. He immediately saw the value to Sabah of having one of its own, Catherine Jayasuriya, promote the state as part of her efforts to raise awareness for Duchenne
Jon is 31-years-old and has Duchenne. Jon lives independently in Worthing, West Sussex, UK, supported by a team of caregivers who help him. Jon has very little mobility throughout his body, eats only pureed food and needs to use a ventilator to help his breathing for about 16 hours a day.
Jon works part-time at a local disability organization and is an active campaigner for the rights of the disabled. He has a Bachelor’s Degree in Politics and International Relations, a Master’s degree in Environmental Studies and a Ph.D. in Government.
In 2011, Jon made an inspirational film, “A Life Worth Living – Pushing the Limits of Duchenne.”
Jon also enjoys a good glass of wine or two with friends down the pub, and enjoys cinema, theatre and comedy shows.
Neil lives in Newport Beach, California with his family. His oldest of three children, Dusty, has Duchenne. Neil is a civil engineer and principal of Brooks Street, a California-based real estate developer with offices in Newport Beach and Orinda, California. Neil was born in Sierra Leone, and lived in England and Australia prior to making his home in the United States. He joined the board of Parent Project Muscular Dystrophy in 2003, and served as the Chairman from 2005 through the end of 2007.
Pace is a 32-year-old with Duchenne living in Los Angeles, California. He is of Native American, German, Danish, and West Indian (Virgin Islands) heritage. Pace is a mentor, advisor, and a specialist in teaching disabled individuals to become independent, like himself. He travelled to Oceanside, California to participate in filming for Dusty’s Trail and kept the crew amused with his humorous comments.
Pat is the founding president and CEO of Parent Project Muscular Dystrophy, the largest non-profit organization in the United States solely focused on Duchenne. Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne, through research, advocacy, education, and compassion.
Lucas is an 18-year-old from Newport Beach, California. His older brother Dusty has Duchenne. Lucas is an accomplished musician and enjoys playing bass and guitar.
Lucas feels a connection to Sabah as his great grandmother was Kadazandusun. He climbed Mt. Kinabalu in 2011, as part of the inaugural Expedition Mt. Kinabalu. In 2012 Lucas returned to Borneo with two of his high school friends to be part of the second climb. “I climbed for my brother Dusty. We raised a tremendous amount of awareness for Duchenne in Malaysia and the film will raise even more worldwide,” said Lucas.