Life Science Cares New York’s Post

At foundations like the Stupski Foundation, where we refer to ourselves as "progressive," we spend significant time pondering, promoting, debating, and discussing ways to advance social policy and share power. We would like to think that we, and our peers, are being innovative and inventive. Foundations that typically refer to themselves as "conservative" that focus on reinforcing the status quo, in my experience, rarely spend time discussing trust, general operating support, capacity building, and/or advocacy, because they have been doing it for decades. And doing it very well, unfortunately. Progressive foundations might consider paying attention to what conservatives are doing. This article best illustrates my point. #philanthropy https://lnkd.in/gEgNuNv6

Today I had the pleasure of meeting with Ann Coulter accompanied by SHRO board member, Andrew Douglas, at his birthday in Bonita Springs Florida, with his loving wife Sally. Every year Andrews birthday has a surprise element. This year it was a guest speaker Anne Coulter which was amazing. After cake, we had an open and honest discussion on what is happening in the Republican Party. In an atmosphere of openness and honesty, we grappled with the question: Can we stand behind Trump? And if not, what does the future hold? Can we support Trump? If not, what happens? Anne Coulter's insights illuminated the room, addressing each query with depth and perspective. A reminder that amidst political uncertainties Only contributions toward ophthalmology research are requested, no physical gifts were allowed all the charity went towards research. www.drantoniogiordano.com | www.shro.org Antonio Giordano Sbarro Health Research Organization Temple University Università degli Studi di Siena #SHRO #drantoniogiordanio #antoniogiordano #FortuneItalia #sbarrohealthresearchorganization #AnnCoulter #RepublicanParty #trumpsupport #futureofgop #PoliticalDiscussions #opennessandhonesty #birthdaysurprise #bonitaspringsflorida #ShroBoard #andrewdouglas #SallyDouglas #ophthalmologyresearch #charityevent #guestspeaker #PoliticalInsights #communityengagement #GOPDebate #politicalthoughts #birthdaycelebration #Philanthropy #PoliticalDialogue #communitysupport #socialresponsibility

The data is clear! When you invest in women, communities prosper. Join me by investing in the brilliance of women and girls across Minnesota! #WomensLeadership #FeministGivingDay

Everything we do is centred around making a difference in the field of health and medical research. Bellberry’s model is unique. We’re an independent not for profit company that provides Human Research Ethics Committee (HREC) services. We are the largest provider of HREC services in Australia. Our dual objectives are to protect the welfare of human research participants, and improve the quality, efficiency and effectiveness of research. We do this by providing robust, thorough, timely and expert HREC reviews, as well as reinvesting the surplus funds we generate from the professional service we provide, back into medical research in Australia. Philanthropic initiatives such as the five-year Bellberry-Viertel Fellowship that is awarded to some of the brightest research minds in the country, allows researchers to focus on their research rather than worrying about how to fund it. Ultimately, this helps to find solutions for some of the most challenging medical problems we’re facing. For us it’s all about making a difference in the work that we do. #research #philanthropy #notforprofit

Despite being one of the most common forms of Muscular Dystrophy in adults and children, and causing whole of body, life long disability in thousands of Australians, Facioscapulohumeral Dystrophy is not well known and many within our patient community find it difficult to access a diagnosis, care and support. FSHD Global Research Foundation is advocating for our patient community, driving systemic improvement around diagnostics, clincial trial readiness and clinical care as Australia's peak body for FSHD. We target improved quality of life for people living with FSHD and work to fast-track therapies through our funded research, advocacy programs, industry partnerships and patient engagement services. Help us raise awareness for this cruel and relentless disease, and support our advocacy program by donating through your hands, heart, or wallet. #FSHD #clinicaltrialreadiness #advocacy

https://lnkd.in/gNfKR957 The NAPPA PANS PANDAS Capitol Hill Advocacy Day is less than a month away, and there is still time for you to register and make plans to join us in DC on April 12th. We have 15 states represented so far (California, Florida, Georgia, Massachusetts, Maryland, Alaska, Michigan, Texas, New Hampshire, Vermont, New Jersey, New York, Connecticut, Pennsylvania, and Virginia) and would love to add more. If you don't see your state in our list, please visit the link and make your voice be heard in DC. Please consider signing up to join us, and please consider also registering for The Alex Manfull Fund 5K at Hains Point on Saturday morning to raise funds to support research into PANDAS. You can register and/or support the 5K by visiting "https://lnkd.in/gCaMmdYH..." PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) is characterized by an acute onset of obsessions and compulsions and/or tics following a Group A Streptococcal (GAS) infection. Other symptoms may follow, including, for example: restricted eating, separation anxiety, general anxiety, sleep disorders, personality changes, severe mood swings, irritability, ADHD-type behaviors, dysgraphia, loss of math skills, urinary frequency and incontinence, explosive rage, extreme impulsivity, and suicidal ideation. All symptoms invariably wax and wane. In extreme cases, all facets of daily life can be affected such that some patients may become unable to speak, eat, or even dress themselves; these patients may not be able to attend school and may need to be hospitalized. It is a disorder that affects the entire family. Early diagnosis and treatment can make all the difference to the youth and young adults and their families.

In 2019, our vibrant new nonprofit organization, Support Fibromyalgia Network, faced a formidable challenge: the significant oversight of fibromyalgia by public health authorities. Fueled by a blend of frustration and determination, we, alongside a group of extraordinary advocates, embarked on an unprecedented journey of fibromyalgia advocacy. Our efforts marked the beginning of a new era of support for the fibromyalgia community—a commitment we've passionately upheld through 2019, 2020, and virtual hill days ever since. On March 13th and 14th, we navigate the corridors of Capitol Hill, championing the cause of fibromyalgia advocacy and awareness. We're immensely grateful for those joining us in person, recognizing the significant physical and financial sacrifices involved. Yet, the unanimous consensus is clear: the time for change is now. Together, we continue to fight for recognition, understanding, and progress in fibromyalgia care and awareness. Join us in this enduring battle for change—one community, united and strong. 💜 ✊ #Fibromyalgia #FibromyalgiaAdvocacy #SeeWhatOthersCant

Linked in Friends - please help me and The Alex Manfull Fund by forwarding this message to anyone you know at Facebook and Meta. For unknown reasons they have deleted multiple posts about our upcoming 5K in DC to raise funds to support research and education around PANDAS and PANS. ANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Word is spreading fast about the actions by Facebook and Meta and the media have now expressed interest in learning more. To learn more about PANDAS and to help us mitigate the damage Facebook and Meta have done to our fundraising efforts by making a contribution please visit: https://lnkd.in/d7eM4uPb This is the post by Susan Newman Manfull, PhD who lost her daughter Alex to PANDAS and created (with her husband) The Alex Manfull Fund. Facebook has decided that its platform is not the appropriate place for The Alex Manfull Fund’s efforts to promote our campaign for our upcoming second annual #TAMF 5K and Advocacy Day on Capitol Hill. This campaign , we hope, will raise funds for awareness, education, and research on PANDAS/PANS and other infection-related, immune-mediated neuropsychiatric disorders. Several moms posted photos of their own precious children who have been diagnosed with PANDAS/PANS along with an explanation of the disorder they suffer from. Facebook removed the photos and sent a message saying, “It looks like you tried to get likes, follows, shares, or video views in a misleading way. Your photo goes against our community standards on spam.” The gravity — the horror— of a PANDAS/PANS diagnosis is hard to believe, Facebook, and I wish those posts were misleading but, sadly, they are not. If Alex Manfull — pictured below with Mark Zuckerberg @zuck , and her good friend Emily Unger — were still alive, she could have reached out to her fellow @phillipsexeter alum and asked him to fix this problem. But, alas, she died due to PANDAS. Perhaps, @zuck , you will look into this matter. We would greatly appreciate it because much more funding is needed to research the role of infections (such as strep, Lyme, Covid, mycoplasma pneumonia) and the immune system in producing an array of psychiatric, cognitive, emotional. and physical symptoms. Thank you, @zuck .

Sarcomas are rare cancers in connective tissues such as fat, blood vessels, and nerves. Sarcoma Awareness Month aims to raise awareness about this disease and its impact. Advocates in Seattle established Sarcoma Awareness Month in November 2007 with support from sarctrials.org. Sarcoma sees 15,000 new cases each year, and those fighting this disease need support to cope with the challenges. Recognizing Sarcoma Awareness Month starts with education, spreading information, and generating funds for research. https://lnkd.in/gB8tt53t https://lnkd.in/gVXhS2dv

Minority Donor Awareness Month is a time to reflect on the critical need for more minority donors and to honor the selfless individuals who have chosen to give the gift of life. The statistics are sobering - minorities make up over 60% of those waiting for a lifesaving organ transplant, yet only 30% of registered donors identify as a racial or ethnic minority. This disparity can have devastating consequences, as patients are more likely to find a match with a donor of the same racial or ethnic background. This Minority Donor Awareness Month, let us come together to educate, advocate and inspire more minorities to register as donors. Every name added to the registry represents the possibility of a new beginning - for the donor, their family, and the patient whose life hangs in the balance. Though the need is great, our compassion is greater. #GiveTheGiftOfLife #MinorityDonorAwarenessMonth #OrganDonor #MulticulturalDonors #MinorityDonors #DonorForLife #MinorityDonorsMatter