TOPIC:
Scholarships, Grants & Other Benefits for People with CF

DATE:
Thursday, October 7, 2021

GUEST SPEAKERS:
Laura Bonnell
Founder of the Bonnel Foundation
thebonnellfoundation.org
&
Ellen Pentra
UNC Social Worker
& 
Kimberly Houston
RN, MSN, CPNP and...CF Mom

Discover opportunities available to your child with CF. Our guest speakers will highlight local and national programs available for people with CF. We also invite parents of older children to join the meeting and share personal experiences.

Scroll down below the video to links to resources!

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!

Below is a list of resources mentioned in the workshop. If you have additional resources to add to our list, please leave a comment!

• thebonnellfoundation.org/resources
• teamimpact.org
• victoryjunction.org
• Make A Wish - wish.org
• letsrockcf.org/kicksback
• www.icingsmiles.org
• Free Access to National Parks
• www.cfri.org
• www.milesforcf.org
• www.cflf.org/recreation-grants
• Compass
• www.abbviecfscholarship.com
  
• www.vrtx.com/cystic-fibrosis/scholarships
• cfyogi.org

Enjoy the video presentation, and scroll below for links to recommended apps and websites to help you manage your medications!

TOPIC:
Managing the Medication Madness
Learn tips for organizing and keeping track of medications, the various specialty pharmacies, and getting a system for refilling them so you can save time. Also, learn about programs for CF medications that offer nutritional supplements at no extra cost!

DATE:
Thursday, April 22, 2021

GUEST SPEAKERS:
Clinical Pharmacists, UNC Chapel HillCameron McKinzie, Pharm.D. & Charissa Kam, Pharm.D.

Video Recording of Workshop:

HFealthwell Foundation®

• CF Treatments Fund
• CF Vitamins and Supplements Fund

www.healthwellfoundation.org

Creon® CareForward
www.creon.com/cfcareforward

Live2Thrive (Zenpep®)
www.live2thrive.org

Vivus Healthstore (Pancreaze)
store.vivushealth.com

Vertex GPS
www.vertexgps.com

Pulmozyme
www.pulmozyme.com

MedActionPlan
medactionplan.com

FREE APPS:

MyMedSchedule
medactionplan.com/mymedschedule

Mango Health
www.mangohealth.com

Medisafe
www.medisafeapp.com

Recently, my friend Marla shared a "Frog and Toad Adventure" that was written about the pandemic. It made me laugh. And my daughters. Hard, at parts. Music to my ears. This pandemic hasn't taken away our joy, but some day it seems that laughter is lacking.

Frog and Toad are great — we remembered fondly, my daughters and I, when they each wrote a "Frog and Toad" adventure of their own for an assignment in middle school. Lighter days then.

In many ways, this time reminds me of the younger days of homeschooling. Our days were structured with medical, school, and household regimes. I planned out the meals and did the shopping alone to minimize germ exposure. Now, I plan out the meals, place my orders online, and utilize curbside pickup, grateful for those who shop for me. No more "last minute" trips to the store; with little impulse buying it is good for the budget.

I'm not teaching my girls, anymore — they are responsible for their own learning, for communicating with their college professors. My husband and I are both working from home, so the four of us are spread out in our different "work" zones. Our dog, Oliver, invades most of the zones, when he is not sleeping, happy to have options. Last fall, he dropped in our empty house and then followed me everywhere. Now we has four of us to follow. He is always a bright spot in our day.

Reading "Frog and Toad", hearing the girls' laughs during this serious time of uncertainty, and Oliver's frequent wags, made my day.

Here is a link for anyone interested in reading a light-hearted view of venturing out, cautiously.

TOPIC:
Growing up with a sibling who has CF

DATE:
Thursday, March 7, 2019

GUEST SPEAKERS:
A small panel of young adults who have a sibling with CF

Recording of this workshop available: