Blooming Rose Foundation

Fourth of July celebration Porco style.



Red Lodge Creek Plateau
14 miles, round trip
Elevation gain 4,000 ft in 2 miles.
Brutally amazing.

Reposted from

Even before our entire country and the world rose up with street demonstrations and so many other brave forms of direct action in affirmation of Black lives, we know that many of you in the CF community shouldered the impossible burden of protesting your own system genocide while standing up for our Black peers. We see that labor and we center it and more importantly, we honor it with action old and new. .
We are so honored to have the grace and beauty of Raeshaun, as our newest facilitator of “Inhale Melanin, Exhale Power.” .
Starting Wednesday, July 1st at 5MT/7ET.

Sign up here: https://form.jotform.com/attainhealth/support-group-intake-form

If you have a child with CF who is 10-18 years old- we would be so grateful for your insights as we, (Attain Health) develop a "youth empowerment" program. It should only take 2-5 mins.
And please share! :)
Thanks,
Kat

Can you spare a few moments to take my survey? Please take the survey titled "Attain Health Youth Empowerment Program Survey (For Caregivers of Children who are ages 10+)". Your feedback is important!

If you have a teen with CF, please check this out!

Counseling Overview Gillian Mocek is a Masters student at Spalding University's School of Social Work. She and her husband, Christian, raise their lively one-year-old son, Simon, in New Albany, Indiana. She lives with cystic fibrosis and is thrilled to be a part of the Attain Health team and work with the CF community....

Hello CF community! We received funding to expand our services to caregivers! Check it out and make an appointment if it resonates with you.

Attain Health is offering free health coaching sessions for individuals living with CF AND parents/caregivers!
If you are looking to enhance your health or feel more empowered in your child's care, schedule an appt here:
calendly.com/katquinnporco

The reality of the new health bill is in this article.

http://thehill.com/blogs/pundits-blog/healthcare/340084-new-health-bill-replaces-hope-with-fear-in-cystic-fibrosis #.WVVcXUrIrLM.facebook

New health bill replaces hope with fear in cystic fibrosis patients OPINION | I urge the Senate to consider reforms that prioritize patient needs while also addressing unsustainable healthcare costs.

Hello CF Friends! Anyone in the NYC area and want to be involved in a focus group!?
Details:
5 caregivers total whose child/loved one has one or two copies of fdel508 mutation
90 minute focus group
Being held In person at 200 Varick Street, New York, NY 4th floor
Thursday, 6/8 at 7pm-8:30
Food will be provided
$150 honoraria

"Market research opportunity! Gilead is looking to conduct 45 min to 1 hour phone interviews with people with CF or their parents (US only) who have been diagnosed with chronic Pa and have been treated with an inhaled antibiotic other than Cayston. For those who meet the criteria, we are offering a $75 gift card! To get started, complete the link below:
https://www.surveymonkey.com/r/HNXGD5D"

Inhaled Antibiotic Research March 2017 Survey Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.

Tomorrow is the last day to apply for the first review of applications!

Last day to apply for the EmPower Project for February with Attain Health is tomorrow! Get your apps in!

http://attainhealth.today

I am so excited to be involved with a new initiative the CFF has launched through the Patient and Family Research Advisory Committee, the program is called . The CFF has a wealth of information in the Patient Data Registry- over 40 years of data! They want to know what you as a patient, caregiver or professional in the community want to know about CF. Please join in this exciting movement toward patient-driven research!
Plus, you get to watch this super cute video of Maylie demonstrating a question.

Maylie-InsightCF.mp4 Shared with Dropbox

Are you or your child using Cayston? Here is a great opportunity to share your story!

Hello: We are developing an educational video series featuring people with CF who take Cayston and their caregivers. The goal of this video series is to share tips about how you have successfully integrated Cayston into your daily routine. We are actively seeking participants for this project and we'd love to hear from you. Please take a few minutes to complete this very short survey if you are interested in possibly participating in a video.

Click here to complete the survey: http://videoproj.questionpro.com

If your background and experiences meet our needs then we will contact you for a short preliminary interview. If you are ultimately selected to be part of the video series, you will be paid for your participation in a half-day video shoot, and we will cover 100% of your travel and meal expenses for the trip.

Recruitment Survey for Cayston Video Project | Web Survey Tools