CCFA Resources: Support During Hurricane Sandy

November 5, 2012

Our goal during recovery from Hurricane Sandy

• Educate constituents, volunteers, and staff about CCFA’s efforts to support them during recovery.

• Ensure constituents have knowledge about where to find IBD resources and state recovery/relief resources.

• Provide timely response to all constituents and volunteers.

Practical Matters: Water• IBD patients need to stay hydrated. Water is

the best source of hydration. • If living in impacted areas, remember:

– Drink bottled water, if available.– Boil water for at least one minute, if water

source is contaminated or if you are unsure of the safety of your water. Let water cool, then use.

– Do not eat any food that has come in contact with flood or contaminated water.

• Check the status of your water supply by contacting city and state government – Health & Human Services.

Practical Matters: Food • Keep refrigerator doors closed during

power outages. – Food in the refrigerator will keep

for four hours.– Food in freezer will keep 48 hours. – Discard any food that has been

above 40 degrees for more than two hours.• Use coolers to keep food cold beyond four hours; pack food

tightly together to keep food longer. Use dry ice or frozen gel packs.

• Do not use any food that has been exposed to fire or floodwaters.

• When in doubt, throw it out!

Practical Matters: Medications• Pills: Do not use if exposed to floodwaters or fire.• Refrigerated Solutions: Do not use if exposed

to temperatures above 40 degrees for more than two hours.

• Biologic Products: – Do not use if exposed to floodwaters.– Call the FDA with questions about specific products and

lack of refrigeration: • Monday to Friday, 9:00 – 5:00: 1-800-835-4709. • After business hours: 301-796-8240.

– These questions will be forwarded to the appropriate center or office for advice.

Federal Emergency Management Agency

• If you need assistance from FEMA for repairs, flood damage, etc.

• Register at: http://www.disasterassistance.gov/

• You can also call -1-800-621-FEMA.

CCFA is here to help and support…

Information Resource Center (IRC)

• IRC Specialists are here to serve you!• Specialists can answer IBD questions

and help constituents find relief programs such as:– Medication assistance programs– Ostomy supply programs– Answer questions about medication storage during power outages

• Reach the IRC at: info@ccfa.org or call 1-888-694-8872.

CCFA Chapters – Here to support you!

• CCFA chapters are open.• Staff are working and available to our

constituents.• Don’t know your local chapter?

– Visit CCFA: http://www.ccfa.org/chapters/– E-mail the IRC at: info@ccfa.org

IRC can provide phone, email, and the names of chapter staff to help.

Support Programs

• Web-based

• Live

• Phone/Skype

Support Programs: Web-based Program Web Address – www. Type of Web-based

support

CCFA Community Website

ccfacommunity.org Online community for patients and caregivers – share stories, resources, coping techniques

Community: Online Support Group

ccfacommunity.org/ChatSeries Four-week, 90-minute, professionally moderated support group

Campus Connections ccfa.org/campus-connection/ Site dedicated to college age students

Online Support Group – Open Sessions!

• New session added in response to Hurricane Sandy!

• Registration now open! Sign up today for one of two available upcoming sessions:– Tuesdays from 8:30-10:00pm ET in

November/December on 11/20, 11/27, 12/4, and 12/11– Sundays from 7:00-8:30pm ET in December on

12/2, 12/9, 12/16, and 12/23• Learn more and register today at: http://

www.ccfacommunity.org/ChatSeries.aspx

Support Programs – Live/Phone/SkypeProgram Web Address – www. Type of Web-based

support

Chapter Support Groups

ccfa.org/living-with-crohns-colitis/find-a-support-group/

Live, in-person support groups, 5 to 15 people, over 250 groups available across the US

Power of Two ccfa.org/chapters/ Phone, Email, or Skype-based support, peer-to-peer

Local Education Programs

Mid-Atlantic Region: North Carolina

Saturday, November 10th

Treatment Approaches in IBD: Options to Consider Charlotte, NCRegister: 704-264-0587 ext. 1 or www.ccfa.org/chapters/carolinas

Saturday, November 17th Nutrition and IBD: Choices for Adults & KidsGreensboro, NCRegister 704-264-0587 ext. 3 or www.ccfa.org/chapters/carolinas

Mid-Atlantic Region: Philadelphia Chapter

Thursday, November 8th Understanding Inflammatory Bowel DiseaseHarrisburg, Pennsylvania215-396-9100 x4www.ccfa.org/chapters/philadelphia

Saturday, December 8, 2012St. Christopher’s Family Education DayPhiladelphia, Pennsylvania 215-396-9100 x4www.ccfa.org/chapters/philadelphia

Southeast Region: Tennessee Chapter

Saturday, November 10th The Road to a Healthier Life with Crohn's Disease & Ulcerative Colitis – Patient Education866-814-CCFA x3 to register www.ccfa.org/chapters/tennessee

New York RegionNew York City:Sunday, November 11th

Continuing Medical Education: Best Practices in IBD (For physicians only!)Beth Israel Medical Center: Philips Ambulatory Center Auditorium10 Union Square East646-388-9290 or http://online.ccfa.org/cme2012

Long Island:Tuesday, November 13th

A.S.K (Answers, Support, Knowledge) – Patient EducationRockville Center516-222-5530 or www.ccfa.org/chapters/longisland

Great Lakes Region: Indiana ChapterSaturday, November 10th

IBD Patient Education Conference317-259-8071www.ccfa.org/chapters/indiana

California Region: Los Angeles Saturday, November 10th

Nutrition and IBD: Choices for Adults & Kids Santa Clarita310-478-4500www.ccfa.org/chapters/losangeles

Upcoming National Teleconferences

Register Today for this FREE Program: online.ccfa.org/breakthroughs2012

BREAKTHROUGHS IN IBD RESEARCHTeleconference/Webcast

• Thursday, November 15th at 8:00 PM ET• Presented by James Lewis, MD• Advanced program covering the latest in

microbiome research and recent clinical trials

Save the Date!It’s Up to YOU: Decisions & IBD Management

– Thursday, December 5th at 2:30 PM ET– Presented by David Schwartz, MD– Will provide an update on:

• Risks & benefits of treatment• Advocating for optimal care• Working with your healthcare team to

decide on the best approach

Registration coming soon!

CCFA is here to help!

Contact the Information Resource Center (IRC) or your localchapter for:• Support• Education• Resources

Thank You!