Michuda Construction’s Post

Such an inspiring project and such a powerful video! Medical research needs representation from people from a wide variety of backgrounds to help with funding prioritization, outcome evaluation, and key decision-making. There is a real imbalance of race, ethnicity, age and socio-economic status in research advocates and participants, and it can only change with your help. The poetry in this video explains why perfectly. I have the pleasure of being on the Scientific Advisory Council at Breakthrough T1D (JDRF) and their Insight and Experience Panel plays a key role in shaping the development of support services and innovative research projects. But that too needs more diversity. If you live with Type 1 Diabetes (or care for someone who does) please consider getting involved - https://lnkd.in/eRAQiV-m.

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. Today we meet Victor. His NF2 journey started aged 3. "Our world was turn upside down on January 26th 2022 when we were told he has a large tumor in his brain and two others in his spine. He was only 3 and a half years old. Brain surgery followed immediately, and spine surgery was scheduled a few months later, but part of the spinal tumors regrew. Since then, we live in fear for the future and extreme anxiety MRI after MRI, he does every 3 months since diagnosis. His sight, hearing and walking abilities are tested every 3 months. Victor is now 5, he is an incredibly kind generous funny little boy, living life at the fullest with his two brothers despite all this. He loves riding his bicycle, he walks and runs slowly than the other kids of his age but keeps on being very sociable, and making jokes to everyone he sees " NF2, is a lifelong genetic condition There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure. Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. Today we meet Hermienke she explains to us how her childhood seemed very abnormal with a diagnosis so young, but she is a great fighter to our cause, raising awareness matters dearly to her and she is a fabulous advocate. “ I had my first MRI when I was 12. At 13 my first vestibular schwannoma was radiated, and at 18 the other, along with radiation to a tumour on my brainstem and two surgeries to remove a tumour from my lumbar spine. I have a radiated tumour on my trigeminal nerve and last year I had four surgeries relating to vocal cord paralysis. I spent two weeks barely breathing through a hole in my neck and it was one of the worst experiences of my life. NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure

It is crucial that health research represents everyone. Gaining a deeper understanding of diverse health needs and outcomes will lead to better care for all communities.

"To live a healthy life, is something we all deserve, we need every type of person represented in health research” Frustrated by the lack of diverse representation in health research? Discover why your involvement matters and how you can make a difference. #BeVisible #HealthResearch #MakingResearchInclusive #INVISIBLE

In case you missed it.. ..our latest monthly episode is LIVE on our YouTube channel! Our inspiring guest, Robert Chelsea, the 1st and oldest black man in the world to receive a full face transplant had his face severely disfigured in a car crash accident. A face transplant was set to change his life in a massive way but, it took his medical team years to get the exact match of his skin color for that to happen. It is the reason Cancer Convos with Grace B. is collaborating in raising awareness about organ donation, especially in minority communities, to commemorate National Minority Donor Awareness Month held annually in August. Our recent episode is summarized in this short video, but you need to watch the full episode to listen to the inspiring story of Robert Chelsea, who we cannot cease to be in awe of. Indeed, he is paying his experience forward in an important and impactful way with his Foundation which is raising organ donation awareness. We know that organ donation saves lives, improves health, reduces long-term medical costs, helps medical research, and leaves a lasting positive impact on humanity but how many tick the box when they come across it? 🤔 So, #linkedin family, if you have not given it a thought, next time you see that box, give it a ☑️ I know I will. #cancerconvoswithgraceb #skingraft #organrecipient #organdonationawareness #NationalMinorityDonorAwarenessMonth #changemakers #leaders #burnvictim #facetransplant #healthcare #MedicalCommunity #MedicineMatters #healthpromotion #talkshowhost #womenwholead #MedicalAdvancements #organdonorssavelives

Today is World Neurofibromatosis (NF) Awareness Day. As many of you know, our family has battled with NF over many years. This month, I have taken on the challenge to walk 3400kms with the Barney Army this month and raise $15k! NF is a complex, unpredictable and progressive genetic condition that causes tumours to form on nerves, under the skin, and deep in the body. But importantly, it can affect anyone regardless of gender, ethnicity, or family history.  Highly variable, around 1 in 5 children with NF1 will develop a brain tumour; 1 in 4 will develop chronic pain, spinal tumours are seen in 60-80% of NF2 patients, and on average, the lives of those living with NF1 will be reduced by 10-15 years compared to the average population. TODAY is World NF Awareness Day and today all donations will be DOUBLED.    Thanks for reading and your support!   https://lnkd.in/g4uHRQnu   #conquernf

Join the 2024 SRF Research Challenge to support research like Dr. Flynn's! Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs in Autoimmunity, and how it could help people living with scleroderma. Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the next era of breakthroughs that could end scleroderma. Will you help us accelerate the pace of research so that we can one day end this disease? The best part is that when you make a gift to our Research Challenge, you’ll unlock a matching donation dollar-for-dollar*, thanks to the generosity of two families who, like you, are committed to finding a cure. Double your impact today: https://bit.ly/3RWrUOo P. S. Special thanks to our Research Challenge match donors—Board Members Luke Evnin (Chairman) and Deann Wright, and the Schimberg Family Foundation—for doubling the impact of your gift! *Up to $75,000 through July 31, 2024. #srfcure #sayscleroderma #sclerodermaresearch #scleroderma

As we approach NF2 Awareness Day on May 22, Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Liene who was diagnosed with NF2 at 19 years old and her tumours were big at that time leading to increased pressure in her brain. "I was advised to get Avastin treatments. I was happy to get that help, because first when I was introduced to Avastin, they were a little bit reluctant because of the side effects on a young person like me. But this would mean that I’d get some more years without surgeries ... I moved to Norway, and was asked if I have plans of starting a family some day, and that was the first time they warned me about getting pregnant while on Avastin because it can cause severe damage to the baby" NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. NF2 is for life, an unwavering companion. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Today is #WorldHealthDay 2024, and this year's theme is 'My health, my right'. 🏥 This theme was chosen to champion the right of everyone, everywhere, to have access to quality health services, education, and information. At Pancreatic Cancer Action, we're dedicated to empowering individuals with the right to access education and information about pancreatic cancer. Since 2017, we've proudly distributed over 22,000 health information booklets free of charge. 💪 Additionally, these booklets are certified by the Patient Information Forum, ensuring the health information in our resources is of the highest quality. 📚 You can order your free health information booklets amongst other free awareness materials here: https://lnkd.in/eHnY8KyE 💜 Or support our work by donating today, and help us reach more people with our health information: https://lnkd.in/gNK__EE #MyHealthMyRight #WorldHealthDay