Have you been on a FIRST to Know Call?
Why Join A FIRST to Know Call?
Sharing tips, stories and challenges with others, makes living with ichthyosis just a little bit easier. The FIRST to Know calls are a great way to “meet” other families and individuals. Each call is centered on a topic or subject, and lasts for one hour. You can decide which call is interesting to you and phone in. You can be an active participant, or call in and listen to what others are saying. All calls are held at 8:00 PM Eastern Time.
The past FIRST to Know conference calls have been well received by our members. It is wonderful to have individuals talking to one another, sharing tips, and sharing stories and challenges. There have been requests from our membership to add disease-specific calls to the calendar. This is a great way to "meet" other families with the same ichthyosis type. All calls are held in Eastern time and are phone calls only, so you only need a phone, not a computer.
To participate in a call, simply follow this link and check off the call dates in which you would like to participate. You will then receive an email with the call in information.
August 28 – Sjögren-Larsson syndrome: Sharing Information
September 25 –Bathing with Microbubble Technology
October 23 – ARCI-lamellar type: Sharing Information
November 27 – How to Work with Your Insurance Company
December 18 - Palmoplantar keratodermas (PPK): Sharing Information
Join in the chat on the FIRST Facebook Group pages! Members must be approved to be part of the page to participate.
Days and times will be posted on the page.
FIRST Facebook Group Pages
FIRST for Parents - https://www.facebook.com/groups/FIRSTforParents/
FIRST for Teens - https://www.facebook.com/groups/FIRSTforTeens/
FIRST YAWI - https://www.facebook.com/groups/FIRSTYAWI/
FIRST for Adults - https://www.facebook.com/groups/FIRSTAdults/
Tips on how to make the most of the FIRST to Know Call
- Call from a quiet location.
- Don't put your phone on hold if you have on-hold music or advertisements, as this will play back into the conference room.
- Disable your phone's Call Waiting (by dialing *70 before the conference number), otherwise the beeping may disrupt the call.
- Consider keeping your phone on mute (by pressing *6) to keep out extraneous background noise.
- You'll want to have as strong a connection to the conference as possible. For example, a landline will sound better than a cell phone or VoIP line.
January 31 – National Conference: What Are the Benefits of Attending?
February 28 – Harlequin ichthyosis: Sharing Information
March 20 – Babies, Toddlers and Skin Care: Tips to Make Care “Easier”
April 24 – Netherton syndrome: Sharing Information
May 22 - Understanding Occupational and Physical Therapy
June 12 – Erythrokeratoderma variablis (EKV): Sharing Information
July 24 – Grandparents: Helping Your Grandchild and Your Adult Children
Sunday, February 15 Siblings of those affected with ichthyosis
Sunday, February 22 PPK: Connecting families
Sunday, March 1 Netherton syndrome
Sunday, March 22 EI: Connecting families
Sunday, April 19 IEP? 504? Making Sense of Your Child’s School Resources.
Sunday, May 3 X-linked Ichthyosis: Connecting Families
Sunday, May 17 Lamellar: Connecting Families
Sunday, May 31 Going to college? How to Prepare for a Great Experience
Thursday, January 9 - Netherton syndrome: Meeting Each Other
Thursday, January 23 - Ichthyosis 101 – Understanding More About This Rare Disorder
Tuesday, February 4 - What is Going On with Research?
Thursday, February 20 - X-linked – Meeting Each Other
Thursday, March 6 - School Resources: Getting Your Child Ready for School
Thursday, March 20 - Lamellar: Meeting Each Other
Thursday, April 3 - Keeping Cool: Overheating Tips
Tuesday, April 15 - EI: Meeting Each Other
Sunday, May 18 - Vacation and Ichthyosis - Traveling and Managing Ichthyosis Away From Home
Sunday, June 1 - PRP - Families Connecting Together
June 29 - Teens - What's Up?
July 13 - XLI - Families Connecting Together
July 27 - College 101 - What to Expect When You Get to Campus
August 10 - Harlequin - Families Connecting Together
Sunday, September 21, 2014 - Lamellar: Families Connecting
Sunday, October 12, 2014 - Darier disease: Connecting Families
Sunday, October 26, 2014 - XLI: Connecting Families
Sunday, November 9, 2014 - Harlequin: Connecting Families
Thursday, February 21 - Lamellar: Connecting Families Together
Tuesday, March 5 - Netherton syndrome: Connecting Families Together
Tuesday, March 26 - EI: Connecting Families Together
Tuesday, April 9 - X-linked: Connecting Families Together
Thursday, April 25 - Teens Rock: An Open Dialogue for Teens, with Teens
Tuesday, May 7 - Aging Skin: How is Your Skin Changing?
Wednesday, May 22 - Darier Disease: Bringing a Community Together
Thursday, June 6 - Vulgaris: Connecting with One Another
Tuesday, June 20 - Time for College: Transitioning from HS to College
Wednesday, July 10 - Infections: What Are They?
Thursday, September 12 – Lamellar Families
Tuesday, September 24 – Laundry and Clothes Care
Thursday, October 10 – EI Families
Tuesday, October 22 - Itch
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