GFPD President on Rare Disease Fundraising and the Ice Bucket Challenge

GFPD President, Shannon Butalla, recently shared some thoughts on the Ice Bucket Challenge benefiting ALS research, and on the work of generating awareness for rare diseases. Read her comments in the Lincoln Journal Star: http://journalstar.com/news/local/cindy-lange-kubick-going-beyond-the-ice-bucket/article_f42da061-e6c4-50d1-8ef6-f82d8bd3e5cc.html

A Military Mom of Four and Former Homeschooler Shares Her PBD Experience

Ashley Maple, mother to Sophie (10), Lydia (8), Madden (6), and Archer—who has PBD and turns 4 in September—discusses what it’s like to raise a big family and find balance in the day-to-day at her home in Havelock, North Carolina. With four children, I’m curious how you manage each day. Do you have help? It is very challenging raising four children. We stopped homeschooling a year ago because I was so overwhelmed. School [outside of the home] has helped me find some balance, coupled with finding a fantastic preschool program for Archer. My husband is currently deployed, so two of my children are spending the summer with family, which is also a huge help. What are some of the challenges you f

GFPD Parent Brings Special Needs Shopping Carts to Her Town

Way to go, Carolina! Thanks to a GFPD mom, children with special needs in Turlock, CA, now have access to a Caroline’s Cart in their local grocery store. http://www.turlockjournal.com/section/12/article/26844/ We appreciate all of Carolina’s efforts to improve the lives of children, including those with PBD! Carolina and her husband, Jose, also hold an annual event honoring the memories of their sons Diego and Adrian. Read about last year’s Dinner Dance: http://www.thegfpd.org/diego-and-adrians-2nd-annual-dinner-dance-benefits-gfpd

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