CF MOM FORCE #GetReal
CF Mom Force: #GetReal
As moms of kids with a rare disease, we want to #GetReal about what makes a difference in prescription drug access. So many of us are waiting on new and innovative medicines that aren’t available yet, and we are rooting for science to find advancements. We support real solutions that will not hinder investments in rare disease research.
Policy proposals on affordability should focus on Real Patients who need new treatment options and not open the door to discriminating policies that undervalue the lives of the disabled and chronically ill and limit access to innovative and life-enhancing medicines.
Moms of rare disease patients need Real Reforms that lower the price they pay for innovative medicines at the pharmacy. If we have copay assistance, like through a copay card, it should count. Any reduced price on medicines offered to pharmacy benefit managers should be reflected in the real price patients are paying.
Patients and their families should have the tools they need to make the best decisions about their Real Health Care Costs, like how much their insurance companies will require them to pay out of pocket for the medications needed to save lives and stay healthy.
As purchasers of healthcare, we should have Real Information about how health insurers and pharmacy benefit managers limit access to prescription medicines. Such as if the medicines we need are covered and what barriers could delay starting provider recommended treatments.
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Here are our Real Stories:
Laura Bonnell – the brutal truth of CF
Mother of two daughters with CF, Laura Bonnell talks about the mental stress of waiting for a cure, or a medication that can help your kids with CF live a longer life. And what happens when that hope is dashed? You rip up the carpet.
Patti Tweed – self care
Patti’s lives in Canada. Her son Devin is an adult with CF. As an experienced CF Mom, Patti has great advice about self care. Interesting Patti fact: She was a CF nutritionist in a clinic when her son was diagnosed. Patti has played a huge part in making lives better for those living in Canada with CF through her advocacy. The CF Mom Force is in this together. #cfstrong
Laura Bonnell. Family disease
Jamie Rudnyky – Empower
Jamie Rudnyky is the mom of Louisa who is three years old. Louissa is her youngest of two. Jamie says it’s important to give CF children information that will empower them and keep them doing their treatments. You can find her on Instagram @jrudnycky
Rebekah Farley – ask question, you’re your child’s expert and advocate
CF Mom Rebekah Farley has two children, her 7-year-old daughter Madelynn has CF. Rebekah’s advice, advocate for your child, and yourself. Rebekah is a plus size model for QVC. You can follow her on IG @rebekah_plusmodel Rebekah lives with her family in Pennsylvania.
Danielle Coffee – advocacy
CF Mom Danielle Coffee’s 11 month old daughter Lennon has cystic fibrosis. Danielle is already thinking about how important it is to advocate for her daughter, and how important it will be for her daughter to advocate for herself. Danielle lives in Michigan.
Laura Bonnell – empower
Laura Bonnell is the mother of two adult daughters with cystic fibrosis. She is also the Founder of The Bonnell Foundation: Living with cystic fibrosis.
Lisa Lockman – transition between H.S. and college
Lisa Lockman’s 21-year-old daughter Ally has CF. Lisa and her family live in Michigan. Lisa gives us advice about the transition between high school and college. Twitter @ljlockman
Jen Caruso – self care
CF Mom Jen Caruso advocates on behalf of her 19-year-old son, Michael. Michael is an incredible athlete and recently ran in the Boomner Esiason marathon. Jen’s advice is self-care for CF parents. You can find her on Instagram @carusochipoletti or on FB: Jennifer Caruso Chipoletti
Kim Bowman – going forward after the death of a child
CF Mom Kim Bowman has two children with cystic fibrosis. Brett is 25 years old and Blake is “forever 14”. Kim talks about moving forward after losing a child. Shortly after Blake died from CF, older brother Brett needed a double lung transplant. Brett survived and is thriving after the transplant, but due to bacteria in the new lungs, he lost his eyesight. Brett now has a leader dog and is attending college. You can find Kim Bowman on FB.
Transition to adulthood
Deb Schaller – let kids be kids
Deb Schaller is the mother of Emily Schaller (http://letsrockcf.org). She’s been an advocate her entire life. She talks about the importance of letting kids be kids, regardless of their diagnosis. You can find Deb on FB.
Bean Corcoran – advocate
CF Mom Bean Corcoran is the mother of 25 year old Will who recently graduated with his Masters in Environmental Sustainability. Bean talks about the importance of advocacy. She is a friend to The Bonnell Foundation and helps spread the word about all things CF! You can find her oil paintings on Instagram @beanc1
Jane Mitchell – Kinetic sand
Jane Mitchell is the mother of two kids. Her daughter Hannah has CF. Jane and her family live in Tennessee. Jane has great advice on some safe sand fun your kids can have, even when they’re in the car! Jane is on the Board of the Bonnell Foundation.
Everyone has something, we have CF. But it’s okay to remember, CF is hard.
Laura Bonnell – CF is a family disease
Laura Bonnell is the mother of two adult daughters with cystic fibrosis. She is also the Founder of The Bonnell Foundation: Living with cystic fibrosis. Laura talks about the importance of empowering your kids to speak up their care. She even has an unconventional idea: forgetting about CF (take a look). Bonnell lives in Michigan with her family.
Tik tok: @thebonnellfoundation
Carol Spadinger (Rod’s mother)
Rod Spadinger honors his late mother Carol who raised him with some great advice. He can do anything! Rod runs CF Vests for life (you can find them on IG and FB)
Lili Hunt – Empower your child
Lili talks about the importance of preparing your young child for a life with CF. We’re grateful to Lili for doing this video in Spanish. The Hispanic community is under diagnosed. Because a lot of people in the Hispanic community have a CF mutation that is not as common, it is often missed in newborn screening. Newborn screening has only 60 mutations on the panel (the most popular ones) and there are 2,000 different mutations. Check out our website for the Latin X Familia page to get more information if you’re in the Latin community.
Michele Ciancimino – CF Nutrition
Michelle Ciancimino lives in Las Vegas, Nevada. Her 28-year-old daughter Alexa has CF. Michele is a Integrative Nutrition Certified Holistic Health Coach and has some nutrition tips related to CF.
Beth Vanstone – mental health
Beth Vanstone lives in Canada, with her two adult daughters, one of whom has cystic fibrosis. Beth has been advocating for all things CF since Madi was born.
Laura has two daughters with cystic fibrosis. She talks about the importance of science and innovation for their future.
Jerry Cahill has cystic fibrosis and has had three transplants (lung, kidney and liver). He talks about the importance of science and innovation.
Colton Teicher has CGD and talks about why science and innovation is so important to him, and to all of us.
Sarah Paulette talks Science and Innovation
Jinx Constine talks Science and Innovation
Carolina Sommer’ daughter has a rare disease. Hear her story and see why she is fighting for science and innovation.
Bean’s son has cystic fibrosis. She talks about why science and innovation is so important.
Sarah is a patient and advocate in Washington State. She’s fighting for science and innovation.
Sharon Tiger has a daughter with a rare disease and is fighting for her via science and innovation.
#Science and #Innovaion – Rare Disease Moms speak up. Thanks to Karen McEwan for sharing her story about her daughter Alaina who suffers with a rare disease. She has been hospitalized more than 100 times. So proud of all these little fighters, their Momma’s and Dads.
Our #science and #innovation campaign continues. Thanks to Kayla Morelli for sharing her story.
New Jersey CF Mom Joan Galinkin advocates in honor of her son! CF Mom’s are in this fight together.
Beth has a son with cystic fibrosis. She talks about the importance of continuing to supporting legislation that promotes innovation!
Thanks to another wonderful Mom for sharing her passion for #science and #innovation. Rebekah Farley has a young daughter with CF. Thanks for using your voice to raise awareness!
The campaign was made possible through an unrestricted grant from Pfizer to The Bonnell Foundation.