iSACRA provides support and information to individuals with sacral agenesis/caudal regession syndrome and their families. iSACRA promotes awareness and collaborates in advocacy and research to enhance the quality of life of persons with this condition and to advance research knowledge.
iSACRA is a new organization. Recently elected volunteers serve on the iSACRA board of directors. A mission statement, bylaws and articles of incorporation have been drafted. Immediate goals include gaining nonprofit status and working rapidly to provide information to new parents, medical providers, and the general public.
Currently, iSACRA is already actively supporting over 320 individuals with CRS/SA and their families. iSACRA maintains an active Facebook site for individuals and families to communicate, exchange information and advice, and offer support. This website is another avenue of information and support. Additionally, iSACRA hosts meet ups approximately 4 times per year in various locations.
As a new organization, iSACRA looks to a future of ongoing program development to include education and medical programs, government outreach, conferences, camps, and social events, mentorship, awareness month, publications, local chapter organization development, fundraising and grant support to expand the activities of the organization and to meet unmet needs of families and adults with CRS/SA.
On our website you will find opportunites for meets ups with others who have CRS/SA and their families, information about people with CRS/SA, articles about various topics related to CRS/SA, and links of interest. Membership is FREE. just email us and answer the questions on the 'contact us" page. J
(this is the NEW email address for the organization)
President: Jessica Rogers
A young person with CRS/SA, Jessica was born in Sao Carlos, Brazil. She now makes her home in Virginia, USA. She is an avid sports woman and her accomplishments include several junior swimming records as well as two American women's paralympic swimming records. She was recently selected as a member of the US paralympic team for the Parapan meet in Mexico and aspires to swim in Rio for the 2016 Paralympic games . Jessica was named the junior national disabled athlete of the year by Sports 'N Spokes Magazine, 2011.
Vice President: Jahna Berry
Jahna is an adult with CRS/SA and also Spina Bifida. For most of her adult life, she has been actively working to share information about CRS/SA with families and to connect with other adults. She has had a long time dream of making a centralized organization about CRS/SA a reality and is thrilled to see this effort now underway.
Secretary: Danielle Shaw
Danielle is the parent of an active elementary school student with CRS/SA. She has experience as an editor of educational and medical textbooks and is also a freelance writer. Her CRS blogspot is a great resource for parents.
Treasurer: Phyllis Rogers
Phyllis is a parent of 8 children, one with CRS/SA. She has a background in interpreting/translation, cross cultural issues, special education, and disability rights.
Additional BOARD MEMBERS:
Connie Morrisroe is the parent of an outgoing 12 year old son with CRS/SA. She brings a wealth of experience related to medical issues and parent advocacy.
Dan Curry is a strong supporter of persons with CRS/SA and has experience with developing and growing nonprofit organizations