RARE Revolution Magazine’s Post

So many thousands of patient-volunteers and their allies have spent years of full time, unpaid work in effort to try to find treatments and support for their #raredisease communities, with little to no assistance from government or the private sector. Why is society leaving it up to the sick to find their own treatments and support millions of suffering patients, while corporations like big oil and big pharma still get handed subsidies despite already being successful? It's well past time that similar investments are made by governments and big pharma into non-profits who do the actual work of serving patient communities. Investments provided to rare disease non-profits saves healthcare/ mental health costs down the line and any new findings echo for generations thereafter. Hey big business peeps! What's your excuse for not giving? Most organizations run only on private peer to peer fundraising donations. What does it say that most of our funding in the past 3 years have been bequeaths and being named "charity of choice" from our members who have passed, living out their lives to the end with no real treatment for their #raredisease? We need our communities to do better! Please help! #Arachnoiditis

The entire rare disease community, and the congenital anomaly community, are at risk. Bad economies = major loss of NGOs, patient support, and research. 1000's of patient organizations will close in 2024 due to lack of funding and volunteers. 100's of new and splinter organizations will be created in a misguided attempt to raise funding and support that will only undermine research, destroy communities, divide funding, and multiply overhead costs. In an election year such as this one when it seems the world is on fire, attention of 1000's of foundations, grantors, volunteers, industry is focused on putting out the same fires.... drowning them in funds and other resources. 90% of funding goes to 25 causes. Read that again. 90% of funding goes to 25 causes. The well known, highly funded organizations are thriving but the 1000's of other causes and patients are neglected. And they will die if we don't diversify funding, collaborate on support, stop competing on any level, and focus on all sources of research and cures. The old ways are now gone. We must pivot. We must fight together for every single patient. Please support our communities. Please read and share. And please support RARE Revolution Magazine. We need them desperately.

Did you know that 5.6 Million++ Americans are living with limb loss and limb difference? The “plus-plus” acknowledges that the known estimate does not include everyone. The limb loss and limb difference community includes many talented people with remarkable journeys and stories. The @AmputeeCoalition aims to tell stories, advocate for the needs, and provide education and support for people with limb loss and limb differences. Show your support, and let’s celebrate Limb Loss and Limb Difference Awareness Month.  #AmputeeCoalition #LLLDAM #LLLDAM20

Youth participation in voicing the impact of climate change is crucial. As agents of change in society, their involvement must be supported and encouraged. The future belongs to them, and it is essential that all actors in society collaborate to amplify their voices and address the challenges of climate change together. ChildFund International in Indonesia Barnfonden #YouthAction #ClimateAction #ChildFundIndonesia

What do Social Justice, Racial Justice, Climate Justice and Gender Justice all have in common? They all *start* with Decolonisation Dismantling Capitalism Ending supremacy What we need to prosper as a species, as communities and as individuals, is surprisingly simple. But we've made it sooo complicated. We have created systems that *require* us to separate, to disconnection, to segregate. The world is burning. And organisations are *competing* for funds. They're trying to campaign and advocate without upsetting (white) people. And *certainly* without pissing off funders. It's like everyone's been given a bucket of water and all they need to do is coordinate trowing their buckets at the same time but they're too busy making sure *their* water is traceable. We all need to *stop* pretending that we achieve the change we need Without dismantling the systems of oppression that FEED on injustice. 

Did you know that millions of individuals around the world still lack access to necessities and opportunities? As a result of this, some struggle so hard to break the cycle of poverty, while others give up, accepting the downs of life as their fates. At the Matthew Lawrence Foundation, we're committed to changing that reality. Through our advocacy efforts, we aim to liberate underprivileged communities from the chains of poverty, discrimination, and inequality. But we can't do it alone. We need your support to spread awareness and drive meaningful change. Together, let's stand up for justice, equality, and the rights of all. Join us in our mission today! It’s all about Making Living Fulfilling. #humanity #impactthatmatters #changemaking

The efficacy of a #LossAndDamage fund hinges on its inclusivity, particularly in granting communities direct access. In response to this imperative, youth activists passionately advocate for concrete actions to transform the fund from a mere conceptual notion into a practical, tangible solution that adequately addresses the vast scale of needs. It is their fervent call to bridge the existing gap and usher in a new era of authentic #climatejustice. Join the movement: #LossAndDamageFinanceNow! #lossanddamageyouthcoalition

What we usually forget about creating a brighter future In today’s world filled with challenges, small acts of kindness can create change and spell a brighter future. At Matthew Lawrence Foundation our mission is to build the future by empowering members of the underprivileged society, thereby bridging the gap. Your support enables us to: - Fuels our passion for helping underprivileged people. - Spread the word about underprivileged communities. - Empower individuals, thereby creating a brighter future. We can build a foundation of hope and opportunity together. Support us as we work toward a better world. Because when we uplift the least among us, we elevate humanity as a whole. #ChangeStartsWithYou #EqualityForAll #NGOImpact

Our Managing Director Bonnie Chiu, Natsayi Sithole, Interim CEO at Renaisi-TSIP and Katie Fowler, CEO of The Social Innovation Partnership (TSIP) in this statement reflected on the alarming rise in racist, xenophobic, and Islamophobic violence across the UK, indicating that the violence is rooted in systemic racism and fueled by harmful political discourse. They highlight how outraged they are by these events, but are also motivated to reaffirm their commitment to the core missions and critically examine and strengthen their approaches to be genuinely anti-oppressive and effective in addressing systemic inequalities. Bonnie, Natsayi and Katie call on funders to support long-term resilience-building in targeted communities and to prioritise local, community-led initiatives. Read the full statement: https://lnkd.in/eCqW2jYG #SocialImpact #Equity #AntiRacism #Solidarity #CommunityEmpowerment #Resilience

Ana, a 16-year-old from Sikka, East Nusa Tenggara, has amplified the voices of children on the climate crisis to a global audience. At the United Nations High-Level Political Forum held on Tuesday, July 10, 2024, in New York, USA, Ana revealed disturbing facts and called on stakeholders to take action. Ana mentioned that children are forced into marriage as a solution to family financial problems, girls miss school during menstruation, and young people migrate for work only to fall victim to human trafficking. All these issues stem from the climate crisis. Moreover, there are cases of orphaned children, child neglect, and other forms of violence against children and women. In the session titled "The Intersectionality of Climate Insecurity and Violence against Children: How Young Leaders Are Taking Climate Action to Protect Themselves, their Families, and Communities," Ana then detailed how climate change causes these problems. Her insights are not just personal observations but are derived from consultation meetings of the Youth Voice Now members. Together, they identified environmental issues, particularly those related to the climate crisis, that lead to violence against children. --- Youth Voice Now Sikka was established through a project with the same name supported by Barnfonden. Through this project, young people received training and resources to identify community issues, develop and implement solutions, and advocate in forums from the village to district levels. Although the project concluded in mid-2023, participants from Youth Voice Now Sikka remain actively engaged in various forums, conducting regular meetings, taking actions that contribute to mitigating the impact of the climate crisis and advocating for children's rights. Kudos to Ana and the young climate action warriors! We are proud of you! Make your voices louder! Husnul Maad Mitra Tobing Reny Haning ChildFund Alliance ChildFund Asia Region ChildFund International #ClimateAction #ClimateChange #YouthVoice #ChildFundIndonesia