Camille Barfield’s Post

Loving our community and all we are achieving. Our Summit in Seattle set a new level of understanding at to why we do what we do, the people that we do it for ans with, what we are achieving and how. It’s rare to experience effectively the cure of a disease, (effective eradication of polio, smallpox and a few others come to mind). At EB Research Partnership with over 40 clinical trials underway, 1 FDA approved treatment in 2023 and 2 more expected in 2024 we are on the cusp of this rare achievement. #joinus as we #findacure for #epidermolysisbullosa EB Research Partnership (Australia) Cure EB Cure EB

“Tinkers to Evers to Chance”. Maybe the most famous Double Play combination in MLB history! Now granted, that was 1905 to 1910 and perhaps a bit “Dated” for this audience. Maybe a more recent example of Trammell to Whitaker to Any Schmoe, of the 1977 to 1995 Detroit Tigers, who hold the Major League record of 1,918 Double Plays works better for most. Either way, the importance of your Medical Team combination, can not be under stated when fighting for your life. Today's Blog Post - Finding Hope Amidst MSA: The Power of a Strong Medical Team https://lnkd.in/gKYQfyEm When facing a rare and fatal disease like Multiple System Atrophy (MSA), the journey can be overwhelming, filled with uncertainty and fear. But amidst the darkness, there is a glimmer of hope that can shine brighter than ever - a strong medical team. In this post, we'll explore the vital role played by three key players in the fight against MSA: your Primary Care Physician (PCP), your Neurologist, and an experienced Clinical Neurologist who specializes in your rare disease. Sharing this journey isn’t just about me; it’s about raising awareness for MSA and contributing to the incredible work of the Michael J Fox Foundation. https://lnkd.in/g-jqhvQX Won’t you please consider making a donation 😊 Thank you for being a part of my journey. 🙏💪 #MSAawareness #ResilienceInAdversity

I was diagnosed with ALS in June. I am now 100% in a wheelchair. The cost of equipment to just maintain any type of quality of life is astronomical from wheelchair lift, a wheelchair compatible van, and home modifications to make my house ADA accessible. My sister-in-law has put together this go fund me to try and help me as I face the everyday and unexpected challenges of ALS. Any bit helps, and my family greatly appreciates any help. Some scary but true facts about ALS are: Every 90 minutes, someone is diagnosed and passes from ALS. 90% of cases occur without a family history. Onset is usually between the ages 40 & 70 years. Life expectancy is 2 to 4 years. By 2040, ALS incidence is predicted to increase worldwide by 70% #fuckALS https://gofund.me/56529fdc

Its Sunday on the blog and time to catch up with Avastin Diaries. An interesting read for Decembers blog - let me know if anything resonates with you, longish one if you want a cuppa while you digest it. The pic is our beautiful xmas tree at the hospital which is always decked out and finely lit. Have a read here:- https://lnkd.in/epAD8azT #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Did you know that May is NEC Awareness Month? In 2014, the Canvasser family founded the NEC Society after their son Micah tragically died from complications of the disease just before his 1st birthday. They chose May as #NECAwarenessMonth because of the importance of partnering with and elevating mothers to build a world without this devastating disease. Mothers are accelerating NEC research, education and advocacy while providing the most protective therapy against #NEC - their milk. The NEC Society's motto, "from pain to power", recognizes the profound heartache and trauma following a NEC diagnosis. While we cannot lessen or erase this pain, together we can harness the power of our heartache and channel our anguish to help other families while supporting The NEC Society's mission. Learn more below as we work to build a world without this devastating disease: #preventNEC #NECawareness #healthcareprofessionals

In a world where medical care accessibility varies widely, CF Vests Worldwide is making waves in bridging the gap for #CysticFibrosis (#CF) patients globally. Founded by Rod Spadinger, this nonprofit is reshaping lives through vital medical equipment redistribution. I had the privilege of speaking with Rod about his journey, the impact of CF Vests Worldwide, and ways to support this noble cause. You can read about our conversation and support the cause through the link below. https://lnkd.in/gmmezwTh

POV: when you are just so proud that Two Maids franchisees focus on community service. ★ Cleaning for a Reason ★ is a system wide effort to clean homes for cancer patients. Way to go Two Maids franchise owners! #homefranchiseconcepts #communityservice #franchisesuccess

Where do your contributions go? ●Getting up-to-the-minute research into doctors’ hands so they can better present and treat heart disease among patients. ●Groundbreaking pediatric heart and stroke research that is key to saving babies’ lives. ●Providing information that can save a lifelike how to eat better, how to recognize the warning signs of a heart attack, and how to talk to a doctor about critical health choices. ●Funding research programs that have contributed to many important scientific advances, such as the first artificial heart valve. Your donation helps us be a relentless force for a world of longer, healthier lives. https://lnkd.in/eP7Xjqh #ECTHeartwalk #EasternCTHeartwalk #heartwalk #heartwalking #iHeartScience #HeartConn #heartwalk2023

Its Sunday so that means Avastin Diaries on the blog! Its hard to believe actually how quickly time has gone and we are in fact 6 months into Avastin treatment. When clinics talk to you about timescales that first 6m sounds a long long way off and yet somehow here we are! We have scanxiety atm as MRIs and clinic are upcoming when we will know if Avastin is working. If it is then we continue, if not we re-evaluate. So NF2 superheroes! ... find your courage, grab your cuppa & don your capes for a short read of todays blog #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

https://gofund.me/35a5d2c1 Big progress today. steps without the walker 70' x 2, 120', and 140'. steps with the walker 120', 220, 240' the big accomplishment 16 steps no assistance. tentative discharge date 10/10. the cardiac rehab.