Orphan Disease Center | University of Pennsylvania的动态

This is what started my advocacy for cystic fibrosis. Before we found Piper's Angels Foundation, we were doing walks to raise money for a national CF organization. But a local, grassroots organization that focuses on the social determinant of health for someone with CF stood out to us more, so we decided to pivot and started getting involved with Piper's Angels & the Crossing For CF. It was the best decision we made, we haven't looked back since! If you want to learn more about The Crossing, the video below is a short explanation of what we do and why.

We talk to leading charities United Mitochondrial Disease Foundation and The Lily Foundation along with expert clinician and researcher Michio Hirano of Columbia University to understand the science behind our mitochondria and their role in rare inherited disorders and wider public health. They share their insights into the challenges and opportunities presented by unlocking the science, and discuss the importance of long-term funding, collaboration and data sharing to accelerate progress in the field. A field where a patient-focused approach will be fundamental to achieve personalised therapies for over 400 involved genes and known mitochondrial disorders Read here: https://lnkd.in/gPF9yfaY #Mitochondria #MitochondrialDisorders #RareDisease

The Myasthenia Gravis Foundation of America (MGFA) hosted its first MG walk in Boston since the COVID-19 pandemic. It was a pleasure to volunteer, organize, and be part of it and meet the amazing people in this community. This walk was a great opportunity to connect with MG patients, caregivers, and advocates. For those who don’t know, Myasthenia Gravis is a rare autoimmune disease where autoantibodies attack different receptors in the skeletal neuromuscular junction. In short, Myasthenia Gravis patients experience rapid fatigue of muscles that affects their everyday lives. We also surpassed our $15,000 fundraising goal. These fundraisers are critical for advancing research and treatments for Myasthenia Gravis. As Kevin O’Connor, a Yale principal investigator focused on Myasthenia Gravis and rare disease research, said: “The work that MGFA does is important not only for patients but also for researchers, as it provides us with the funds needed to understand the disease and better target it for treatment.” #AWorldWithoutMG #MGStrong #Research #PatientAdvocacy?

?? Psoriasis Action Month: Uniting a Community, Empowering Individuals ?? Each August, the National Psoriasis Foundation (NPF) leads the charge in celebrating Psoriasis Action Month. This is a time to come together, share our stories, and act towards a future free from the burdens of this chronic condition. As part of the 125 million-strong global psoriasis community, you are not alone in this journey. Your experiences, your triumphs, and your challenges are shared by so many others who understand the realities of living with this disease. Remember, there is strength in the community. By coming together and supporting one another, we can overcome obstacles, celebrate the victories, and pave the way for a brighter, healthier future. This Psoriasis Action Month let's embrace the diversity of our experiences and the unity of our purpose. Together, we can create meaningful change. #PsoriasisActionMonth #NPF #ThisIsPsoriasis #PsoriasisAwareness #ChronicIllness For more information on ways to get involved, visit the National Psoriasis Foundation website at www.psoriasis.org. ?

Come Walk With Us! On May 4th, A3Access Advisors will be joining the Moving Day Walk in San Francisco to show our support for the Parkinson’s Foundation and those patients and caregivers impacted by Parkinson’s disease. Parkinson’s is very personal to me.?Twenty-five years ago, my father passed after a two-decade battle with this horrible disease.?It’s severely debilitating with no known cause, cure, or prevention.?Impacting nearly one million Americans and 10 million people worldwide, Parkinson’s is second only to Alzheimer’s as the most prevalent neurodegenerative disease. While there is great science focused on treating and hopefully one day curing Parkinson’s, we are not there yet. We must do more to accelerate our efforts to identify treatment alternatives. The Parkinson’s Foundation is committed to making the lives better for those at risk and suffering from Parkinson’s by advancing research, improving access to care, and funding community programs. Their efforts on behalf of Parkinson’s families deserve our support! I’m hoping you will join us in making a difference.?If you would like to join our team, or show your support, you can learn more here https://lnkd.in/ghP2QGA7.??

Every year, millions of lives are saved and improved thanks to the selfless generosity of blood donors. Whether it's supporting patients undergoing surgery, receiving treatment for cancer, or experiencing trauma or emergencies, donated blood plays a vital role in medical care and emergency response efforts around the globe. However, despite the essential nature of blood donation, there remains an ongoing need for more donors, particularly in times of crisis or during periods of high demand. With various factors such as aging populations, increasing rates of complex medical procedures, and the impact of natural disasters, the demand for blood continues to grow. On World Blood Donor Day, let's raise awareness about the importance of blood donation and encourage more people to become regular donors. Whether you're a first-time donor or a seasoned advocate for blood donation, your support is invaluable in ensuring a stable and sustainable blood supply for patients in need. Be a hero—donate blood today! https://lnkd.in/e9Q6iMm #WorldBloodDonorDay #GiveBlood #SaveLives #DonateLife

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

FEEDBACK! It's a challenge - at least for me - that when I give a virtual talk, I don't always get much feedback about how it "landed." My CTA is to ask for an application of the learning with 1 of 2 actions (primarily on LinkedIn) in the next 24 hours. And I did that last evening when I finished the talk for the Public Health Career Club at PH SPOT on "Not Networking - Engaging Instead." You can imagine my surprise - and ELATION - when I finished a quick bite of a late supper less than 2 hours later to find a message from Linda Setiawan with this wonderful feedback: "I appreciate your advice to approach networking with a mindset of "engaging" in a way that adds to the conversation." AND - she had already written a post!! And she is now working on her banner and her "About" section to increase her visibility. #PomPomsToYou, Linda, for moving forward with the actions so quickly - and for moving your intentions into RESULTS!

DON'T FORGET this month's Live and Ticking! Wednesday 24th April at 4pm, listen to our latest webinar titled 'How Much Do You Know About High Blood Pressure?!' Register your interest below: https://lnkd.in/gRJD64ME #webinar?#bhf?#charity?#information?#support?#liveandticking

I have signed up to be a Coach for the AHA and lead a team. Please consider joining us or donating! This is truly an amazing cause and I can’t imagine any of us can say ourselves, family, or friends have not been affected by cardiovascular disease.? *Did you know that cardiovascular disease occurs every 39 seconds and is the No. 1 killer of all Americans? *Did you know heart disease also kills more women than all forms of cancer combined? *Funds from this walk had led to scientific breakthroughs like pacemakers, cardiac stents, and artificial heart valves. *Walk with us if you’re a survivor, of if you family member or friends have experienced a stroke or any form of heart disease, heart attack, cardiac arrest, heart failure, an irregular heartbeat, heart valve problems or congenital heart defects. *Funds go to research, advocacy and CPR training. *On Charity Navigator, the AHA earned a 99%, 4 Star rating!!?