As many of you know, my oldest child Aaron was born with a genetic condition called Cornelia de Lange Syndrome, or CdLS (www.CdLSusa.org). CdLS is a rare genetic syndrome that affects 1 in 10,000 live births. A wide range of intellectual and physical development is impacted and varies between individuals born with CdLS. There is no cure. I first became aware of the CdLS Foundation in 1983 and attended a gathering of families in Frederick, MD. Over the years, I have volunteered as the Florida Regional Coordinator, Awareness Coordinator and have been Co-Chairperson for the National Conference since 2010. In addition, I have been on the Board of Directors of the CdLS Foundation for several years now. As a result, I have experienced firsthand the Foundation's impact on the lives of those affected by CdLS and their families. I strongly believe in the Foundation and am so proud to be part of what they do. On May 28 of this year, Aaron passed away. I have always known that Aaron's siblings, Chris, Justin, and Kendal, loved Aaron, and he impacted their lives considerably. However, I was not prepared for his death's impact on them or us as a family. Through all of this, the Foundation has been by our side. The Foundation offers many support services to individuals with CdLS, parents, professionals, and caregivers. In recent years, there has been an increased focus on siblings. A parent's initial encounter with those familiar with CdLS may be the Foundation through a phone call with a Family Service staff or possibly other families through social media. A sibling's initial contact may not be until sometime later and possibly at a CdLS Family gathering or the National Conference. As we continue to navigate our way through the grief process, my sister and I decided to take a preplanned personal challenge and focus on the siblings of individuals with CdLS while raising awareness for CdLS. So, on September 21, my sister and I are hiking from the south rim of the Grand Canyon to the north rim of the Grand Canyon. Due to COVID, the 2020 National Conference was canceled. The next National Conference is in June 2022. My sister DeeDee and I are asking for your support. Our goal, through donations, is to raise $10,000.00 for the sibling program called Kids Explore. This program is for siblings during the conference while parents are attending medical consults and workshops. The program consists of two days of planned outings. This program offers the siblings an opportunity to form new friendships with siblings who also have a brother or sister with CdLS. The sibling program also allows siblings to open up to one another regarding CdLS if they choose. While every aspect of the National Conference is focused on CdLS, i.e., research, medical issues, education, consults with different professionals, workshops, and connecting with other parents on the same journey, the sibling program allows those attending to also be with others on the same journey. Unfortunately, the sibling program does come at an additional cost to families. Therefore with your support, our goal is to reduce that cost and possibly eliminate it for the 2022 National Conference. All of the monies donated will go directly to the Kids Explore program. As much support as I have received from the Foundation and other parents over the years, and now with Aaron's passing, I realize his siblings and other siblings need the connection too from their peers and the Foundation. Please help me and my sister DeeDee raise awareness for CdLS and financial support for the sibling program Kids Explore. Thank you, Angie Young and DeeDee Kearney Support Hiking for CdLS