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Taking It To Extremes for Cystic Fibrosis
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CFCR executive director, Bob Simmons, recently completed another X-treme hike to raise money for Cystic Fibrosis research and treatment. While hiking on Pilot Mountain in 2008, Bob and his friend Amos Beason came up with the idea to organize a 30.1 mile/one-day hike of the Art Loeb Trail as a fundraiser for CF.
"When Amos and I came up with the idea for the hike, medication to treat the underlying causes of CF was still a dream," Bob explained. "Since 2009, the North Carolina spring hike has become an official annual event, with an annual fall hike added in 2012 and hikes in other states beginning in 2013, raising millions of dollars. Also since then, real progress has been made in the search for a cure, with the discovery and certification of Kalydeco, the first drug to treat the underlying causes of CF in some people."
Kalydeco offers hope for some people with CF (about 4%) by making the condition manageable and dramatically increasing their life expectancies. The annual cost of Kalydeco is about $300,000. While government funds are available to help offset some of that cost if approved, they are limited and much more help will be needed. Additional research and development is indispensable to address other forms of the CF gene and to make Kalydeco more readily available and affordable for those who may benefit.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. They are Benjamin Cobra Sapp (6) and Suki Louise Sapp (4), the grandchildren of Robert McCarter, CFCR managing attorney, and his wife Cebby, and this year Bob hiked in support of Cobra and Suki.
Read more about the hike, see a photo gallery and learn how you can get involved at
our web site.
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May 9, 2015
6:30 p.m.
Founders Hall
Have you got your tickets for Big Bottles and Blues on May 9th? The festivities begin at 6:30 p.m. in Founder's Hall and feature over 100 wines, music and terrific cuisine. Tickets and information can be found at
here.
It is all part of
Charlotte Wine & Food Weekend
, whose mission is to celebrate and advance public knowledge of and appreciation for great wine and food, while making significant contributions to charitable organizations that benefit children and their families in the Charlotte community.
Council for Children's Rights is honored and grateful to be one of the charities chosen.
Our thanks to Charlotte Wine and Food Weekend. Hope to see you there!
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The power of arts education to transform lives and communities was powerfully explored in
Spiral Bound: an acclaimed documentary produced by the Arts & Science Council. Council co-hosted a special screening with the ASC at Myers Park High School on April 17th. We
were honored to have Representative Becky Carney and NC Senator Jeff Jackson with us for this inspiring evening.
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| Sen. Jeff Jackson, Rep. Becky Carney and CFCR's Greg Schermbeck |
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National Children's Mental Health Awareness Day
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National Children's Mental Health Awareness Day for 2015 was May 7th and local organizations joined forces to "Make Charlotte Ring." Council staff joined a group of local leaders and interested individuals on Thursday, May 7
in the courtyard plaza of the Mecklenburg Government Center for a celebration event designed to help raise
public awareness of the issue and the need to reduce the stigma associated with seeking treatment and provide resources for those seeking services for a child or youth.
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CFCR Volunteer Landon Eustace Receives Alumni Pro Bono Award from UNC School of Law
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 Congratulations are in order for CFCR pro bono attorney
Landon Eustache
of Hunton & Williams LLP on being awarded the 2015 UNC School of Law Alumni Pro Bono Award in April.
Landon has been a volunteer attorney with the Council's Custody Advocacy program for approximately four years. As staff attorney John Parker shared, ""Landon is a really fine lawyer and a great volunteer. He handles the cases assigned to him with the great skill, sense of responsibility and ownership, energy, intelligence, and equanimity that is characteristic of him. When asked to help, he never says no."
In addition to the work he does for Council, he also devotes many hours volunteering for Legal Services of the Southern Piedmont, helping LSSP clients with complicated cases and Medicaid appeals. We are grateful for all that Landon does for our community and congratulate him on this well-deserved honor.
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Greg Schermbeck Named A
Marshall Memorial Fellow
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 Greg Schermbeck, Council's Director of Education Initiatives, has been named a Marshall Memorial Fellow. Fellows were selected from 700 nominations across 39 countries in a highly competitive process, with just 10 percent of nominated candidates selected. The Marshall Fellows program is the flagship leadership development effort of the German Marshall Fund of the US, an organization that works to strengthen transatlantic relations by focusing on policy, leadership, and civil society. The fellowship includes 6 months of preparation and 24 days of experience in Europe. Congratulations to Greg on this prestigious honor!
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Final
OST Development Workshops in May
May 14
-Millennial Youth
May 19-
Special Needs Students
*
May 26-Race, Class, Diversity & Social Justice
detailed information on each event.
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West Charlotte H.S.
Family Resource Fair
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Council for Children's Rights joined a dozen other local non-profit agencies at
West Charlotte High School
this month for their Family Resource Fair. We were grateful for the opportunity to be out in the community, sharing resources and telling our story. Parents and students were invited to explore some of the offerings that these agencies provide, learning more about opportunities available: summer internship programs to educational resources, health and mental health assistance and more. We enjoyed good food, met some terrific community partners, parents, and students. And the Choral Ensemble rocked the National Anthem! Thank you for inviting the Council to be part of this event!
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SAVE THE DATE!
Click on Photo for Information
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