Scleroderma Research Foundation’s Post

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** Having served on a many boards, my tenure with The Children’s Tumor Foundation might be the most meaningful and important because I have seen, up-close, the power of investing in scientific advancements. Unlike politics, there is no two-steps forward, three steps backward… CTF is always moving ahead in its efforts to find a cure for Neurofibromatosis (NF) for even when an experiment fails we learn something! And unlike direct service, when an advancement is made, it *does* solve a problem that can impact 150,000 Americans and millions worldwide. It’s a great Board of diverse people who have come together to find therapies for a life-altering disease… I am proud to be a part of it. Sally Gottesman ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** I don’t remember much about my life before NF eroded my spine, leading to daily pain and limiting my physical activity. My hope is that a cure will save someone from the daily pain, discomfort, and disfigurement; allowing them to live a life not knowing NF ever existed. Until that time comes, while I join in the fight for a cure, I will persevere and continue to live the best life possible with the love, support, and encouragement of family and friends Aaron Wickersham ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

𝘿𝙤𝙣’𝙩 𝙢𝙞𝙨𝙨 𝙮𝙤𝙪𝙧 𝙨𝙝𝙤𝙩 𝙖𝙩 𝙗𝙚𝙘𝙤𝙢𝙞𝙣𝙜 𝙩𝙝𝙚 2024 𝙏𝙧𝙞𝙜𝙜𝙚𝙧𝙢𝙖𝙣 𝙏𝙧𝙞𝙛𝙚𝙘𝙩𝙖 𝘾𝙝𝙖𝙢𝙥𝙞𝙤𝙣! These three special events will help us raise money to fund cutting-edge #medulloblastoma research. Medulloblastoma is the most common brain tumor in children, and approximately 250 children are diagnosed with it each year. The current treatments in place are highly toxic to the developing bodies of children—and yet, there are few market incentives for companies to put in the R&D to bring better therapies to market. Funding for this critical research is left up to the nonprofit community, which includes many individuals who have lost a child they love to this malignant disease. That is why our mission is urgent. So when you register for the Triggerman Trifecta, you are helping more children hope for a better, brighter, and cancer-free future. More details about this inaugural event can be found here: https://lnkd.in/gfe25W_J

Over the last year, Deepa Kurup has been my mentor as I took on not only my first role in quality, but became a first time manager. Her expertise and willingness to answer my questions, no matter how trivial, with kindness has been instrumental to my growth. This recognition is so well deserved and I am eternally grateful that she is so willing to share her knowledge with newer entrants in the field. A special thank you as well to Transplant Alliance Foundation for promoting mentorship within the transplant community. In the ever evolving field of healthcare, the importance of mentorship cannot be overstated. Yet, when I entered nursing the concept of a mentor never arose. As we continue to see nursing shortages, I can't help but think that the importance of these relationships must be integrated into the solution. Having someone with whom you can speak candidly to about professional goals, challenges, and interests is imperative-not only for personal growth, but also for cultivating resilience and career satisfaction in a demanding field like nursing.

"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

It's the last day of #Sarcoma month, but the fight to find new and better treatments for one of the deadliest #Cancers primarily affecting #Children continues.🧑🏽🔬 We're excited to announce a new program, #SarcomaAccelerator, funded by the Hofer Muir Philanthropic Organisation together with the Cooper Rice-Brading Foundation. 🙌 For the next two years Prof Ron Firestein, A/Prof Jason Cain and their team will create a collection of #Tumour samples from sarcoma patients and use cutting-edge technology to study these them. “By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective. This approach has the potential to improve survival rates and quality of life for young patients living with sarcoma.” A/Prof Cain Read more about how we expect this new program to be a game-changer in the fight against childhood sarcoma here: https://bit.ly/3AdTU9V L-R; Dr Yuxin (Sally) Sun, A/Prof Jason Cain, Dr Claire Sun, Prof Ron Firestein

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.

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.

https://lnkd.in/g-U4cgaT As many of you know, I have had a lot of titles in life: Director, Manager, Category manager. However, none of them are more important than the titles of Mother, Wife, Daughter, Sister, and Friend. One of the titles I also hold is Chair for the West Michigan Light the Night Walk. This cause has been near and dear to my heart for years now, as my little brother fought and lost his battle with Acute Myeloid Leukemia, August 21st of last year. I encourage anyone who is near to sign up to attend the walk and show your support: https://lnkd.in/g_SwYP5C For those you wishing to show support in other ways I encourage you to reach out. My fundraising page is below, and I have a personal goal of $5,000 dollars. The dollar amount seems so little compared to what this horrible disease actually cost my family, but I will do whatever it takes to ensure no family has to go through what we have, and I know LLS is just the organization that can do it. Many of you on my feed are influential in your organizations, and I encourage you to reach out to Madison Morell and find out how you and your organization can get involved. Corporate walk and fundraising teams are incredible ways to help your organizations create a positive lasting impacts on your communities, and with more than 1 out of every 2 people being touched by a cancer diagnosis, you are impacting your teams as well. Help me reach my personal goal but think bigger and bolder: help US cure cancer. #leadership #cancer #LLS #philanthropy #grief #worklifebalance

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