Granite Telecommunications’ Post

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

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

Best wishes for The New Year - I hope everyone had a joyous break and connected with friends and loved ones. Our vision at Lung Foundation Australia (LFA) is to champion programs and research so that Australians with lung disease and lung cancer can live their best life. I know that annual reports are not high on everyone's agenda to read but this is a good one :) It captures the story of LFA and our purpose. Working for purpose is what gets me out of bed every morning. Working directly with consumers through our advisory and engagement opportunities keeps us grounded and relevant. The consumer voice needs to remain central to what drives our purpose and I feel very privileged to work with consumers who give so generously of their time to make a difference. Frustratingly, the challenges and barriers described by consumers has remained consistent over my 30 years of doing this work - not feeling heard, feeling isolated, struggling to navigate the health system, poorly connected and not given the time or resources to be effective partners in their healthcare. We are working to change that and I know that many of you are also working hard to create that change. For me, I am hoping that 2024 will be less about admiring the problem and more about working on solutions that matter to people and that can create the shift that we are all looking for. It is complex because it requires change at a system, clinical and consumer level; celebrating success is important because it reminds of us of how far we have come and what the recipe for success looks like and it keeps us motivated when it all feels daunting. I hope you re-engage with your purpose in 2024 and if you want to connect with the work of LFA please let us know.

Vestibular schwannomas, or acoustic neuromas, are tumors that grow on the nerves responsible for balance and hearing. In individuals with NF2, these tumors can be particularly challenging, often leading to hearing loss and balance problems. Let's raise awareness about the significance of vestibular schwannomas in NF2. By understanding their impact, we can better support those affected and work towards effective treatments. You can make a difference! Your donation can fund vital research into NF2 and vestibular schwannomas, bringing hope to individuals and families facing this rare disease. Donate now and join us in the fight against NF2: https://buff.ly/3SWE6OD https://buff.ly/4c35L9w Together, we can make a difference and pave the way for a brighter future for NF2 patients. 💙 #RareDiseaseDay #NF2Awareness

Prevention is key. 💛 #StandUpToCancer researcher Dr. Fola May was inspired by the patients she worked with during her clinical training and has dedicated her career to education, prevention, and early detection. Join our mission and help cancer patients everywhere live longer and healthier lives. Donate today at https://lnkd.in/gAk9ptcu. #WhenSheStandsUp #CancerPreventionandEarlyDetectionMonth

Throughout the month of November, VibeTech is supporting this year's Movember4PD Challenge to help raise awareness and funding for The Michael J. Fox Foundation for Parkinson's Research. Join Team VibeTech and make a contribution in support of The Michael J. Fox Foundation for Parkinson's Disease Research's goal of ending Parkinson's Disease for good by visiting https://lnkd.in/gF7JtViW. More than 6 million people worldwide are living with Parkinson’s, which is the second most common neurological disorder. In the United States, approximately 60,000 new cases will be diagnosed this year alone. Currently, there is no known cure for Parkinson’s. As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and ensuring the development of improved therapies for those living with Parkinson's today. When giving through the VibeTech team page, 100 percent of the donation will go straight to The Michael J. Fox Foundation research efforts to speed a cure for Parkinson's disease and improve the lives of those living with Parkinson's today. www.Michaeljfox.org #VibeTech #movember4pd #parkinsons #vibetech3

Throughout the month of November, VibeTech is supporting this year's Movember4PD Challenge to help raise awareness and funding for The Michael J. Fox Foundation for Parkinson's Research. Join Team VibeTech and make a contribution in support of The Michael J. Fox Foundation for Parkinson's Disease Research's goal of ending Parkinson's Disease for good by visiting https://lnkd.in/gfnQU9Na. More than 6 million people worldwide are living with Parkinson’s, which is the second most common neurological disorder. In the United States, approximately 60,000 new cases will be diagnosed this year alone. Currently, there is no known cure for Parkinson’s. As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and ensuring the development of improved therapies for those living with Parkinson's today. When giving through the VibeTech team page, 100 percent of the donation will go straight to The Michael J. Fox Foundation research efforts to speed a cure for Parkinson's disease and improve the lives of those living with Parkinson's today. www.Michaeljfox.org #VibeTech #movember4pd #parkinsons #vibetech3

👀 What an eye-opening experience! 🩺After attending the webinar about Diagnosis Of Rare Diseases, by RD-Portugal with The Ordem dos Farmacêuticos, I had the privilege of meeting Ana Rita Moreira and Luis Miguel Oliveira. Dani's parents, a really cute boy who has, unfortunately, been diagnosed with a rare disease caused by a v-ATPase genetic disorder, which causes developmental and epileptic encephalopathy. A condition that has no known treatment, and is very limiting for children. 👫 As strong-fighter parents who couldn't consent to the lack of knowledge and medical support for their child, they founded the v-ATPase Alliance Association, uniting families affected by v-ATPase genetic disorders, and promoting treatment research and development. 🔬 It is with great honor and enthusiasm that I have become part of this research group, aiding in the search for a treatment discovery! In collaboration with RARE-X, we are starting to build an innovative Data Collection Program 📚 that will allow us to advance research , therapy, and drug development. 💊 🙍♀️ This is a really debilitating condition, where children and their families face enormous daily challenges. If you want to help this mission feel free to share this program or give a kind donation. 🤲🏼 https://lnkd.in/dmjT2QZX 🧬 v-ATPase Alliance: https://lnkd.in/dbDMUvZe

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

Today, because of the last 15 years of effective research, parents of children diagnosed with TSC have more clarity, more direction and more hope. The TSC Alliance has played a crucial role in that process as it has accelerated both research and clinical care. To continue making progress in research, including TAND and other early interventions, we need two things: funding and participation. Whether it’s a small study or a high-level clinical trial, we must have both funding and engaged participants to conduct effective research, which is what drives outstanding clinical care. Only through discovery can we determine what the best practices and therapeutics might be and learn how to take better care of kids and adults with TSC. Help us change the course of TSC today, and consider making a gift to fund TSC research! Donate here: https://ow.ly/g91l50PPq6v