Tau Tug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.

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?

Powerful #scientific evidence which supports the use of #meditation as a cure & prevention for #cancer and many other illnesses. https://sourcethefilm.org/ #immunity

I haven't posted about a non-profit recently. Life has gotten in the way. That will change today. On Saturday night I attended a benefit dinner for The Cure Sanfilippo Foundation and had to post. This organization deserves as much publicity as possible, so please feel share this post. Thank you to Mike Lykes and Economic Alliance Houston Port Region for the invitation to attend. Sanfilippo Syndrome is a rare genetic disease that affects young children. It is often diagnosed around three years old. Sanfilippo Syndrome has been called Alzheimer's for children. The symptoms start as development delays, hearing loss, and extreme hyperactivity. They progress to loss of speech, seizures, loss of the ability to speak, and loss of mobility. Sanfilippo children typically die in their teens. The disease is so rare that it only affects about 15,000 children globally. It is so rare that large biotech and pharmaceutical companies don't spend resources on finding a cure, because they don't see a value. Federal Grants are scarce. There is currently no treatment or cure. At the event, we heard about #frankieprice, the granddaughter of Mike, who is Chief of Staff to Commissioner Adrian Garcia. Frankie was recently diagnosed with San Filippo Syndrome. Frankie, so full of life, deserves a chance at a future. The benefit may be small to the labs that do medical research, but it is enormous to the children and families that deal with Sanfilippo Syndrome. Funding for medical research is left to families and friends. They know a cure is possible. They are asking for support to turn hope into scientific action. Every child deserves a chance to live. To learn more, go to https://lnkd.in/gcanksur. Donate if you can. Share this post. Contact your representative in the Rare Disease Congressional Caucus (https://lnkd.in/giB7Mq-J). Do what you can to help these children get a chance to live. #sanfilipposyndrome #frankieprice #nonprofit #loricares

ALS has been a part of Emily Cox’s family for generations. Her grandmother and great-aunt both succumbed to the disease. Years later, when her father, Peter, began losing strength in his hand, Emily immediately suspected ALS. Peter passed away in June 2024 at the age of 67, leaving behind a devoted family, forever changed. Emily reflects on the harsh realities of ALS: “People don’t realize that this is something that continuously gets worse and takes everything, and just gets harder and harder. It’s almost like a nightmare that’s constantly unfolding, and you never know what’s going to be taken next” Through genetic testing, Emily discovered she carries the same genetic mutation as her father and lives with uncertainty about her future. “I feel like I’m carrying a ticking time bomb,” she shares. Despite the fear, she is driven by hope and determination: “Participating in research was a no-brainer… honestly I would donate my brain if I didn’t need it right now. Ultimately, the greater good is the biggest driving factor.” Emily believes true change will come from greater understanding. “If people knew how devastating this disease is—not just for the person, but for their family and caregivers—there would be more support, funding, and urgency for treatments.” Join us in building a world where Everyone Lives. Double your donation and impact today: https://bit.ly/3V1cjP1 #NationalCaregiversMonth #ALS #ALSResearch #DoubleYourImpact

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.??

?? UNITED AGAINST BONE MARROW FAILURE SYNDROMES! Bone marrow failure syndromes are rare, life-altering conditions that can either be acquired or inherited. ? Inherited cases may have a family history of the condition and can lead to additional health challenges such as heart, skeletal malformations, kidney, eye, and ear issues, as well as an increased risk of blood cancers. The primary goal of Blake’s Army Limited is to raise much needed funds for research into improved treatments and cures for bone marrow failure syndromes. ?? The secondary goal is to financially support families who are affected by bone marrow failure. ?? JOIN US IN THE FIGHT! https://blakesarmy.org.au/

Have you ever thought about giving blood? Did you know that just one hour of your time could save up to 3 lives? NHS Blood and Transplant (NHSBT) is urgently calling for 135,000 new blood donors this year – and they need YOUR help to make a difference. There’s a particular need for Black donors, as approximately 13,000–15,000 people in the UK are living with sickle cell anaemia, the fastest-growing genetic blood disorder. For these patients, regular blood transfusions are a lifeline. Why does ethnicity matter in blood???????? donation? Blood donations from people who share the same ethnic background as the recipient significantly reduce the risk of complications during transfusions. Patients with sickle cell often require Ro subtype blood, which is much more common among people of Black heritage. Yet, only 2% of donors have this vital subtype, while demand is increasing by 10–15% each year. That’s why CAHN is partnering with NHSBT to engage and empower our community to step forward and save lives. Did you know? A regularly transfused sickle cell patient may need the support of 100 donors a year to stay alive. Could you be one of those 100? To find out more or to register as a blood donor, visit blood.co.uk or call 0300 123 23 23. Give Blood TODAY! Together, let’s make a life-changing impact. ?? #GiveBlood #SickleCellAwareness #LifeSavingDonation

Crystal shares, "I chose the word 'RESILIENT' because living with a bullous autoimmune disorder means facing painful, silent battles daily. But through those struggles, we discover strength—and the flicker of light waiting at the end of the tunnel. It is this vision that led me to the welcoming community of IPPF–fostering an environment of support, compassion, and understanding so that patients like myself feel seen. This community means everything to someone trying to find the inner strength to stay resilient." https://lnkd.in/gJybdr5p Behind every rare disease diagnosis is a story. Of course, this personal journey is one of uncertainty and worry, but it is also one of healing and hope. At the IPPF, these stories drive everything we do. Recently, we brought together many in our community at our Patient Education Conference, where attendees shared their “words of hope” and the stories behind them. At the IPPF, resilience is at the heart of what we do. Together, we create a community where no one faces these challenges alone. Support patients like Crystal by donating to the IPPF Holiday Fundraiser now! https://lnkd.in/gJybdr5p #pemphigus #pemphigoid #healourskin #raredisease #autoimmune

During #ArthritisAwarnessMonth, let’s set the record straight: ·??More people in Canada report living with arthritis than diabetes, heart disease, cancer and stroke combined. ·???Arthritis is a leading cause of disability and work limitations in Canada. ·???It affects 1 in 4 women, 1 in 6 men, and as many as 25,000 children in Canada. ·???It accounts for 99% of knee replacements and more than 70% of hip replacements, making it the leading cause of joint replacement surgeries. And still, funding for arthritis research falls short of addressing its widespread impact. As Canada’s largest charitable funder of arthritis research, we are urging our government to invest more and take urgent action for the millions living with the agony of arthritis. Help fund innovative research and other critical initiatives. Donate now at arthritis.ca/aamgift?