Register for CF Move-a-palooza today!
We want our CF community to be healthy and active!
Thank-you to Boomer Esiason Foundation for your grant to support this event.
Report your weekly activity here https://bit.ly/move-a-palooza-minutes [bit.ly]
Follow us on our Move-a-palooza Facebook page
https://www.facebook.com/profile.php?id=61557369955216&mibextid=PlNXYD [facebook.com]
New Hampshire Cystic Fibrosis Patient and Family Advisory Council is a group of CF patients, caregivers, family members and care providers at Dartmouth Health
“Our goal is to enhance the care and quality of life of the Cystic Fibrosis population.”
New for 2024!
Completing an Experience of Care (XoC) Survey is easier than ever! Simply scan the QR code or use the URL link provided during your CF clinic visit to take a survey.
Remember, the XoC survey:
· is short.
· covers in-person and virtual visits.
· is private, it will not be linked to you or your child's name.
But most importantly, the feedback and comments captured in the XoC survey will let us know what is most important to you and your family.
Together, let’s make it better!
If you have questions, please reach out to: NHCFpatientfam@gmail.com or your Team.
Watch our CF Patient and Family Education Night 2023 here:
Watch our 2022 Patient and Family Education Night!
Please complete this survey if you attended in person, online or after watching the video: https://forms.gle/Qhosnuqg2w6yW9RD9
Patient and Family Online Art Gallery
“Breathing Life through Art: A gallery of work by CF patients and family members” features artwork that is displayed at DHMC in the 2K waiting area. Check out the artwork of fellow CF patients and their family members via our new online art show. While submissions are no longer being accepted for the in-person gallery, we are still accepting online submissions. Please reach out to Torie from Child Life for more information at Victoria.miele@hitchcock.org.
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"Becoming Mother"
Melody, mother of CF patient
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"Sam I am"
Melody, mother CF patient
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Untitled
Yves, kid with CF
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Sea Turtles: Care for our Oceans
Hannah, age 15 with CF
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No Horizon
Rosie, Adult w/CF
This photo was taken after sunset in Tramore, Ireland. The lighting was perfect. The subtle horizon ensured that cotton candy sky blended with the sea
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Untitled
Lila, kid w/CF
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Rainbow
Avery, age 6 with CF
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Roses
Shannon, kid w/CF
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Dinosaur Eating Pizza
Dylan, kid with CF
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CF Ribbon
Dani, kid w/CF
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Untitled
Arabella, kid w/CF
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Sam Carving Pumpkin
Thomas, parents of child w/CF
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Embrace
Thomas, parent of child with CF
Acrylic and Oil on Canvas
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Trees
Sam, kid w/CF
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Trees, cont.
Sam, kid w/CF
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Trees, cont.
Sam, kid w/CF
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Breathe
Paula , parent of an adult w/CF
Hand painted on white clay, and finished with a clear glaze.
The inspiration for this piece is my Irish heritage and my daughter's Cystic Fibrosis diagnosis. Ogham is an ancient Celtic alphabet found engraved on stones dating back from the 4th Century CE in Southern Ireland. The alphabet reads from bottom to top.
The word Análaigh is the translation of the word "breathe" in the Irish Language. We appreciate that beathing is often taken for granted with many people but this simple task can be a challenge for people living with cystic fibrosis.
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Color Splash
Maren, age 10 at creation
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Keep Swimming
Regan, kid with CF
Medium: Metalwork
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Hear Me Roar
Regan, kid with CF
Medium: Metalwork
Free Access to Beam Online Fitness
Beam Cystic Fibrosis is an online physical activity and wellness platform designed specifically for adults w/CF. Enjoy live and on-demand classes, in addition to community groups.
Complete the following survey after Patient and Family Night: https://forms.gle/LRBMGGD4nUh3eEq48
Complete the following survey on the MindBlown! CF Learning Kit: MindBlown! CF Learning Kit Survey (surveymonkey.com)
We advocate on behalf of parents, caregivers and patients for the best quality of care.
And meet virtually to share information, address concerns and work on projects to make life with CF a little easier.
News from our PFAC and YOU!
