McClenahan's Family Conference Fund
Donation protected
On Sunday, February 19, 2017 the Smith-Magenis Syndrome (SMS) Community lost our dear friend, Barbara McClenahan. Barbara passed away leaving her two teenage daughters, Chantilly, who was born with SMS, and Chava.
It may be hard for those not in our small, rare community to understand how you can love someone so much and have never even met them. But, we all loved Barb. For many families, she was the first person to reach out to them after the SMS diagnosis. Although she lived in Sitka, Alaska, she managed to send gifts to families on other continents and make them feel as if they were her best friends. We never hugged her in person, but we received virtual hugs daily. She did her “happy dance” when we had good days and “cried ugly tears” when we experienced loss.
For many, she was “almost mystical.” Barb lived off the land…made homemade EVERYTHING, from jellies and jams to cheese and quilts. She canned Alaska salmon and knew the ins and outs of every home remedy. Her advice and wisdom are irreplaceable and her absence leaves a large hole in our hearts.
In honor of what Barb meant to our community, we are collecting funds to help send her family to the upcoming 2018 PRISMS conference. Work schedules are not yet set, so we are unsure how many family members will be joining Chanty in Pittsburgh. Monies will be spent on conference fees first, then the hotel costs and finally travel expenses if there are any left over amounts.
Questions can be sent to Tina McGrevy or Julia Hetherington.
It may be hard for those not in our small, rare community to understand how you can love someone so much and have never even met them. But, we all loved Barb. For many families, she was the first person to reach out to them after the SMS diagnosis. Although she lived in Sitka, Alaska, she managed to send gifts to families on other continents and make them feel as if they were her best friends. We never hugged her in person, but we received virtual hugs daily. She did her “happy dance” when we had good days and “cried ugly tears” when we experienced loss.
For many, she was “almost mystical.” Barb lived off the land…made homemade EVERYTHING, from jellies and jams to cheese and quilts. She canned Alaska salmon and knew the ins and outs of every home remedy. Her advice and wisdom are irreplaceable and her absence leaves a large hole in our hearts.
In honor of what Barb meant to our community, we are collecting funds to help send her family to the upcoming 2018 PRISMS conference. Work schedules are not yet set, so we are unsure how many family members will be joining Chanty in Pittsburgh. Monies will be spent on conference fees first, then the hotel costs and finally travel expenses if there are any left over amounts.
Questions can be sent to Tina McGrevy or Julia Hetherington.
Organiser
Tina Boetticher McGrevy
Organiser
Springfield, OH