Type of Volunteering: Monetary donation
Organization: PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome)
Outcome: Providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.
Here at Rocky Mountain International, we continue to #giveback to causes near and dear to our hearts. This month I, Carrie Jung, asked for our attention to be directed at PRISMS. PRISMS is the leader of the worldwide SMS community and engages, inspires and empowers families, physicians, educators, researchers and more so they can support and improve the lives of everyone affected by SMS.
I chose PRISMS because my daughter, Hailie, was diagnosed with Smith-Magenis Syndrome when she was only 15 months old. It is a very rare genetic disorder caused by a deletion on the 17th chromosome and characterized by a recognizable pattern of physical, behavioral and developmental challenges. Not even her team of physicians could provide us with any valuable information; we were pointed to PRISMS by Hailie’s neurologist to gain answers and insight. PRISMS connected us with parents, documents and resources so we could better educate ourselves on the challenges we would face.
SMS only affects a small portion of the population, and they do not receive large funding for advancements or medical research. Hailie was case #580 in the world at the time of her diagnosis in 2003. Many children with SMS are misdiagnosed with autism, ADHD, failure to thrive or other medical conditions because it can only be diagnosed through extensive genetic testing. Syndromes not well-known by the public or medical community get routinely missed, which causes imperative therapies and treatments to be delayed or missed all together. That is why organizations like PRISMS are so important.
To learn more about Smith-Magenis Syndrome and PRISMS, please visit their website.
Written by: Carrie Jung, Administrative Assistant/Special Projects Coordinator
Hailie Jung with her puppy, Bear. Hailie kayaking down the North Platte River. Hailie in San Diego, California.
