The ULF is dedicated to offering families affected by leukodystrophy resources to thrive. Through our live webinar series and support groups, we hope that families will benefit from sharing knowledge and experiences with each other. As we continue to grow this program, we will post upcoming dates for webinars and support groups here. This schedule is subject to change at any time – registrants of sessions that experience changes will be notified as soon as possible, and this page will always be kept up to date with the most accurate information.
Please note that Support Group sessions are NOT recorded. They will never be recorded, and the discussions that occur during the support group are not made public in any way. The Webinar sessions ARE recorded. The recordings are posted to the ULF Office YouTube Channel in the following 72 hours. If you participate in a recorded webinar session – know that the ULF will post the recordings and your name, voice, video, and/or image may appear to the public. Please take that into consideration when participating.
Wednesday, January 26th, 7 PM Central: Support Groups
Spouses of Affected People, Register here: https://bit.ly/3t5cLym
Women with AMN, Register here: https://bit.ly/32Z94j5
Wednesday, February 23rd, 7 PM Central: Webinar
Supporting and Advocating for Your Child with an IEP, presented by Sharon Bergfeld, Transition Specialist and Special Education Professional
Register here: https://bit.ly/3t8Pcou
Wednesday, March 30th, 7 PM Central: Support Groups
Parents of Affected Children and Adults, Register here: https://bit.ly/3qZlWxS
Newly Diagnosed Families, Register here: https://bit.ly/3Ga88Xu
Wednesday, April 27th, 7 PM Central: Webinar
Rehabilitation and Mobility Devices, presented by speakers from Children’s Healthcare of Atlanta
Register here: https://bit.ly/3334ujQ
Wednesday, May 25th, 7 PM Central: Webinar
Pre-Conference Meet Up: What to Expect at the 2022 ULF Family Conference
Register here: https://bit.ly/3f8lgAt
The ULF Family Conference will be held on June 24 and June 25th. Select sessions will be recorded and/or streamed for those who cannot attend in person. Please click here for further information about this year’s event!
Further support groups and webinars will be scheduled for July – December of 2022. This page will be updated as we continue to secure speakers and finalize topics.