“Kare, Life Ain’t Fair!”
Indeed. After 66 turns around the sun, my daddy used to tell me that saying and still does to this day and it is truer than ever! Young children oftentimes will moan and groan over toys taken, perceived injustices and slights, and a plethora of egregious events that in the reveal of time seem small yet no less painful to cope with. As adults, we KNOW life truly isn’t fair because we have had varied instances at work, in love, and at home that have left lasting emotional scars.
What makes life fair is the people in our lives who are there for us to help us heal and to pick ourselves up and dust ourselves off to fight another day! Our playgrounds are bigger and more serpentine, and the circle of friends is wider than in elementary school but together we strive for equitable outcomes. I for one have been blessed beyond measure to have been on this SWS journey with y’all for 36 of the 66 years and you have made the journey so much more navigable and memorable by your presence and words of wisdom.
Where would I be without Sharon and Noel Gilbert teaching me how to parent Kaelin and all that her world entailed? Kathy Hunter from Rett Syndrome mentored me on how to partner with pharmaceutical companies. Kathy Cappozoli and Melanie Wood jumping right in to do fundraisers and giving me the chutzpah to just ask for a donation…the worst someone could say is no and then you move on til you get a yes! So many of you too numerous to mention but no less cherished have imbued me with tenacity and the SWF with inspiration which ultimately made life a little fairer for those living and coping with a SWS diagnosis.
I hope all of you are heartened by the SWF’s interest in you and yours because we do intimately care about your life and health! We love to hear from you whether it has been a week or years…you are part of our family. You can count on us to have your back when life treats you unfairly. Some programs we foster, and fund are short-term, and you can see the fruits of our labor sooner than later other programs take a little longer to reap the rewards of our collective efforts and participation. Progress is the only option though!
Thank you for all you do to support and sustain the SWF! You ARE the heart and soul that builds a worldwide community of hope and collaboration which keeps ensuring we make our SWS a better and fairer one to live in day by day. Valentine’s Day is just a placeholder to remember that the other 364 days of the year we love you, cherish you, and will never say die!
May your day be blessed and filled with the love of those around you and with those gone on before!
With faith, hope, and love,
Karen Ball
CEO and Founder
