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The New Year brings such hope and promise for all our hopes and dreams! I just put Derek on the plane back home to Montana to his group home, Lighthouse Christian Home. I understand when all these years my mom would always say the house is so quiet after we would leave to go home to NJ. Bittersweet to be sure but family is at the heart of all that keeps MY heart beating. That includes each of you who have joined the SWF family over the years because of your diagnosis and need to glean information and support!

The Holiday donations uplift the SWF financially, of course, so we can continue to meet your needs and fund vital research. It’s like a walk down memory lane for me personally as I’m heartened by the support from new donors and humbled by the continued support from LONG time supporters and families like the Krohn’s, Petersen’s, Haslob’s, Sowcik’s, Melo’s, McIntyre’s, Kenney’s, Rettmuller’s, Healy, Steiner’s, Role’s, Caligari’s, Nehrbauer’s, Smith’s, Whitman’s, and soooo many more!

When I say LONG time, I mean like over 25 years supporters and their continued donations have kept the SWF funded so new families in need of services can benefit from the same level or more so of support! I know that lil video clip I did was homemade and not slick like many would have expected but the point was that TRULY if a beer and pizza are given up by those exponential number of families it’s an “easy peasy” way to fund our ever expanding and growing older family! Thanks for your indulgence and unwavering belief in the SWF mission and vision.

You may have been moved to dedicate yourself because of your diagnosis, my tenacity, the research being funded or any other number of reasons. We STAY united because of our belief in the greater good and hope for the future! We STAY united to generate an impact through collaboration with clinical and scientific researchers. We STAY united to build a brighter future and hopefully one day not have another child face what our child or our own selves have had to endure.

2020 brings many exciting new initiatives for the SWF: uniting all the SWS global organizations, expanding staff to meet extended care needs, funding more research, investigating if more genes are involved, developing zebrafish models to enable cures and so much more! Oh and of course one of the BEST parts for the Board, me, and the staff, is to get together with our newest members and to catch up with our cherished LONG-time supporters. Hope to see you at one of the many national face to face patient networking events!

Best wishes for a wonderful and healthy New Year. Thank YOU for caring and being part of our SWF extended family as we STAY the course…for a reason, a season, or a lifetime!

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