Kim Angel, Executive Director of the Canadian MPS Society would like to create the next ice bucket challenge.
Whether she succeeds at finding that next viral campaign is not known but she has one great advantage over many of advocacy groups also trying to find the next ice bucket challenge – her patient advocacy group is well organized and ready to accommodate a rapid change in attention and awareness that would come with a viral campaign.
The trick now is to find that next ice bucket challenge.
Another challenge, but one Ms. Angel is confronting head on, is bringing the MPS community together. MPSs are rare genetic disorders in which there is an abnormal storage of mucopolysaccharides—long chained polysaccharides that build up in the body. There are numerous MPS disease types based on the missing enzyme involved that is not present to properly degrade the mucopolysaccharide in question. The different types include MPS I (Hurler, Hurler-Scheie, Scheie syndrome), MPS II (Hunter syndrome), MPS III (Sanfilippo syndrome), MPS IV (Morquio syndrome), MPS VI (Maroteaux-Lamy syndrome), MPS VII (Sly syndrome), and MPS IX (Hyaluronidase deficiency).
Those 7 disease types are all different. They have different features and pathophysiologies. Some of them, such as Sanfilippo disease, can be further broken down into different subtypes that also have different features and pathophysiologies.
Some of the MPSs have a treatment available, some do not. Some have clinical trials underway, some do not. Some have their own advocacy groups to help them, some do not. The only stable component that they share is the Canadian MPS Society and Ms. Angel wants to make sure she can help those families and also bring them closer together as there is strength in numbers.
With that strength in numbers, more people can be aware of the MPS diseases. And that is also where the next Ice Bucket Challenge can have an impact.
Ms. Angel said, “my grandfather passed away from ALS. At the time, hardly anyone really knew what ALS was. When I told people my grandfather had ALS I got blank stares. That changed with the Ice Bucket Challenge. Now virtually everyone knows what ALS is.” Ms. Angel added that the same is true about MPS diseases. Nobody knows about them and when she talks about it to people outside of the rare disease community, she gets blank stares. “But the impact that ALS viral challenge had on awareness and research was phenomenal. Hopefully, we can try to discover our own ice bucket challenge for MPS,” said Ms. Angel.
In the meantime, the Canadian MPS Society is continuing to bring the MPS disease community together. Their website is informative. They explain each MPS disease both online and with downloadable brochures available in English and French. They have a list of clinical trials being conducted with details on key criteria to participate and where to get more information. They have research grants available for summer students to help recruit a new generation of researchers to MPS diseases. They have a bi-annual family Conference and a collection of stories from people living with MPS. And much much more. In total, the Canadian MPS Society is doing all the little things very well so when that Ice Bucket Challenge moment happens, they will be ready to educate the whole country about MPS diseases. We wish them luck.