I’m Thankful …

Today in the United States we celebrate Thanksgiving.  Canada celebrated a few weeks ago and according to Wikipedia at least 7 other countries celebrate a similar holiday at various other times of the year.

This is the 149th anniversary of formal observance of Thanksgiving Day which President Abraham Lincoln decreed will be observed on the last Thursday of November. In 1941 President Franklin D. Roosevelt adjusted the celebration date to be the fourth Thursday in November. The actual roots of this American holiday are said to date to the colonial Pilgrims celebrating a good fall harvest in 1621.

Yesterday is usually described as the busiest travel day of the year as millions hit the airports and highways. Sometime a few years ago it became the day before Black Friday and this year retail shopping spilled over into Thanksgiving evening, but I digress …

What really is most important on this day of thanks is family.  Spending time together, putting the stress of day to day life aside, sharing a meal and some drink, hugs, conversation, seeing those who you haven’t seen for months (or perhaps a year), young and old gathered around a family table, remembering those who have passed before us, and perhaps celebrating a new birth.

Today, Teryn, Lindy and I celebrate Thanksgiving together. The turkey is large, but the gathering is small. We’ll think of Jclynn and Kevin in Florida with our grandkids Christopher, Madilynn, and Emily … we’ll think of Teryn’s brother Gary and his extended family in Minneapolis, my mother, sisters and brother in LA, and my aunts and uncles and cousins across the country from San Diego to Marietta.

We will remember Darcee, who 17 years ago was just recovering from a massive seizure after her bone marrow transplant … and didn’t make it to her 10th Christmas.

We’re grateful for being able to provide a spare bedroom for Katharina (33) and Minnie (her Saint Bernard), who lived with us the past year while she went to Medical Assistant school. And we’ll share in Kat’s pain – she had to put Minnie down earlier this week.  And that reminds me of Dekota, our Keeshoud, who we had to put down last winter.

While I hate MLD, I am so thankful for those it has allowed us to meet over the years. From across the US, to Japan, Australia, New Zealand, to all parts of Europe we’ve met hundreds of MLD families and are touched and honored just haven shared a hug or some photos together.

I’ve been working on not just MLD issues, but also rare disease issues for quite some time and I am also thankful for those around the world at research labs, at other advocacy groups,  in industry, at the FDA, NIH or in Congress, most of whom are over the tops supportive of the needs for those with MLD and other rare diseases.

May you all take time today to remember that even in challenging times, with the devastation that MLD or some other rare disease may have brought to your family, … that there is love.  I’m thankful for the smiles, kisses, hugs, or just the twinkle in someone’s eyes – and I hope you are too.

Thank you all for being a part of our lives … and blessings to each of your families today and throughout the year.

— Dean

p.s.  Please share this blog post with your friends and across your social media connections.  We’re going to cover a lot of ground in the coming weeks and everyone will have an opportunity to learn and participate.

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