“Awareness is like the sun. When it shines on things, they are transformed.”
― Thich Nhat Hanh

Without any intention to offend, I’m going to be frank. In general (and increasingly so in recent years), I’ve not always been the biggest fan of “(insert cause here)— day”. Partly this is because the “market”, for lack of a better word, is getting oversaturated. Think about it for a moment, we have national food days (avocados and donuts…I love you both but  – really)? National pet days (I feel like I should love my dog with the same verve and authenticity every single day, right)? And if you don’t believe me, you can check out these 1500+ (insert your cause here) days at this website: https://nationaldaycalendar.com/. Woah.

But there are deeper reasons too for why I sometimes balk at awareness/notoriety days. They may unintentionally trivialize something that is strongly important to a given sect of society, creating a brief flare up of interest only for it to then fizzle out for the next 364 days. The resulting tone can feel superficial. Additionally, emotional videos, photos and editorials may be blasted throughout social media, making some individuals feel uncomfortable or worse, triggering a loss from long ago or very recent.

And so, with International MPS Awareness Day fast approaching on May 15^th, I’m having the same inner debate that I always have this time of year. Do I make a call out for purple?  Do I write a blog post?

But there is a strong list of reasons to celebrate MPS Awareness Day, for which I’ve decided to compile a list.  Here it is:

1. The Great Unifier: As parents we all have differing philosophies on raising our kids and parents of MPS children are no exception. Yet on this specific day, we are all bound together by what is most important, the health and wellbeing of our children, as well as our sincere reflections in memoriam.
2. Acknowledgement – It’s a wonderful feeling for a parent when your child gets acknowledged for being special; perhaps their team won a state championship, or your child made the honor roll. For an MPS parent, seeing a sea of vibrant purple proudly worn at schools and in workplaces can evoke a similar pride.
3. Education – due to the phenomenon that is social media, information is being shared at a rapid, (almost frantic) speed. This can be a great thing. It can also be a challenging thing. Sometimes people will glean a bit of a headline and run with it, leaving parts of the story behind. This is especially true in science and medicine and is no different for the parent of a child with MPS. International MPS Awareness Day brings about the chance to have conversations. In recent years, for example, I’ve been asked “what is this comparison I’m seeing between Sanfilippo Syndrome and Alzheimer’s Disease?” (Answer: the outward presentation of SF is quite similar to the stages of regression seen in AD, however the pathophysiology is quite different). Another question I’ve received: “Is MPS and Sanfilippo Syndrome one and the same?” (Answer: Sanfilippo Syndrome is just one of many forms of MPS, here is a complete list):

• Hurler/Scheie syndrome , MPS I H (Hurler disease), MPS II-(Hunter syndrome), MPS III A, B, C, and D (Sanfillipo syndrome), MPS I S (Scheie syndrome), MPS IV A and B (Morquio syndrome), MPS IX (hyaluronidase deficiency), MPS VII (Sly syndrome), MPS VI (Maroteaux-Lamy syndrome)

4. Outreach: This day can forge new family-to-family, peer-to-peer and professional- to professional connections or any combination there within. Through such a concentrated flurry of videos, posts and articles on social media and in the news, new connections can be made.
5. Volunteerism: a day such as this one can generate a tremendous movement of good will. Sasha has personally experienced entire classes of schoolmates dressed in purple, enormous purple banners being made for awareness photos, purple ribbons being sold at the front desk of her high school, newspaper articles featuring her story and purple teams of mules pulling her up Mt. Washington.  I myself have witnessed friends (and the children of friends) sending messages and photos dressed in purple, or watched a striking video of my own yoga teacher in her studio dressed in purple, doing a beautiful silent yoga sequence in honor of this day.  I have witnessed the coworkers of friends, people whom I have never met, join in to wear purple while all sending well wishes together in videos.  Awareness Days at their finest can act as a spring board to generate an interest in a cause and volunteering that continues for a lifetime.
6. Marking of Time: For many MPS families, the 15^th of May is a day that has become sacred. Parents might find themselves mentally revisiting their diagnosis journey, reaching out to other MPS families to see how they’ve been faring or posting updates on their CaringBridge pages and Blogs (shameless plug!)
7. Financial support: Again, due to this influx of heightened interest, non-profits such as the National MPS Society, Ben’s Dream and the Purple Lemonade Stand for Courage and many others may see a spike in sponsorships and donations. Since MPS is what’s referred to as an “orphan disease” (ones that are so rare the result is less federal funding in research dollars than for more common conditions) this makes it especially important.
8. Aiding in Diagnostics: as hard as this is to ponder, there are stories of parents of not yet diagnosed MPS children who, upon seeing a photograph or reading an article related to MPS, then realized this might very well be their own reality. MPS Awareness Day, by raising visibility, can also assist in diagnosis.

These are just a few of the reasons to consider wearing purple on MPS Awareness Day on Wednesday, May 15^th.  Each reason listed is incredibly important and stands alone on its own merit. But perhaps above all, the love that is felt through the purple gestures made by friends and families across the globe, the photos that are shared, montages that are made and stories that are written might be the biggest reason of all. Thanks so much for reading today and if you have a reason that you’d like to share as to why you honor MPS Awareness Day, please post it in my comments section! And thanks for getting ready to bring out your purple!