Change.org - Approve our medication

Parents of children living with NPC are calling on the FDA to approve life-saving new therapies. “We are patients and parents of children and adults living with an ultra-rare and fatal disease called Niemann Pick Type C (NPC). We are in a fight for our lives to get new therapies approved by the US FDA, and we need your help.” Without a cure, these therapies are parents’ only hope of helping their children walk, talk, play, and swallow. Join these parents in demanding the FDA approve necessary medication for children with NPC. Tell FDA to Save Our Children’s Lives 12,194 have signed NPC Mamas’s petition. Let’s get to 15,000!

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Hi, my name is Sara and I am writing with a group of patients and moms of children living with an ultra-rare and fatal disease called Niemann Pick Type C (NPC).   My five year old daughter, Marian, has NPC and is one of many children and adults relying on an experimental medicine to keep living. But now, her medicine and another might get taken away. We are in a fight for our lives to get new therapies approved by the US FDA, and we need your help. The clock is ticking, and every day that goes by NPC is damaging us and our children. NPC is like Alzheimers, Parkinson’s and ALS rolled into one, except even more rare, causing extreme declines in how we move, talk, think, and even eat - pretty much everything. This disease occurs across all ages - and, horrifically, will frequently first show up in young children, even babies.  There is no cure or approved therapy here in the United States...but there are several medicines that have been in development and used experimentally by patients for years and years. Patients AND our expert doctors see the tremendous benefits of these medicines in helping us. This is a BIG deal. It’s life saving.  Heartbreakingly, the FDA has become a barrier to helping these therapies cross the finish line - restricting access, jeopardizing development, not listening to our expert clinicians, discounting patient benefits, and not understanding our ultra rare variable and fatal disease. FDA is keeping most new patients from accessing these experimental medications by erecting hurdles to early access programs, putting a clinical program on partial hold and denying requests for approvals. And we have had enough. This is putting TWO medicines patients need to live at risk of being taken away. If our kids lose these medicines, they will die. We need the following changes to occur immediately:  The FDA must lift all barriers creating life or death uncertainties for patients currently receiving investigational therapies.  The FDA must use regulatory flexibility and evaluate medications to treat NPC with the knowledge that NPC is ultra-rare, degenerative and fatal.  The FDA must immediately work with the scientific and patient community and design trials that are feasible, meaningful and do not put patients in harm’s way. Add your signature to tell the FDA that it must address the needs of those with NPC by approving medicines and increasing access to existing medicines.  This is urgent. Ours and our children’s lives depend on this. Please help save our lives. Thank you!! NOTE: To donate to our cause, please donate to www.gofundme.com/saveourmedicine. If you want to donate to the administrative costs for change.org the platform prompts you with that option after signing. This is optional and can be bypassed, those funds do not go to our NPC efforts.  You can follow our stories and fight on: Facebook Instagram Website #dontgiveuponnpc

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Presbyterian Disaster Assistance Calls for Prayer and Action in Haiti

Hear us as we pray in sorrow for the people of Haiti, and the lives lost and communities shattered by the devastating earthquake and its aftermath. These island neighbors, still not wholly restored from the catastrophic earthquake of 2010, continue to struggle to move forward under increasingly heavy burdens of poverty and chronic hunger, civic unrest, hurricanes and COVID-19. They need the oneness of our purpose and the tangible outpouring of our love, our prayer in action.

Presbyterian Disaster Assistance (PDA) is providing emergency relief and short-term recovery n the impacted areas through our established local partners and in collaboration with ACT Alliance and its members. The PC(USA), through PDA and together with regional World Mission colleagues, will remain active throughout the entire recovery process, accompanying our partners in the area as they determine long-term program needs and providing financial support for rebuilding and resilience.

THE NEEDS FOR THE RESPONSE WILL BE GREAT. GOD'S PEOPLE ARE ONCE AGAIN CALLED ONTO STAND IN THE "GAP"— GIVE. ACT. PRAY.

GIVE— Gifts can be made at presbyterianmission.org/give-haiti, by phone at (800) 872-3283 or by check, which can be mailed to Presbyterian Church (U.S.A.), P.O. Box 643700, Pittsburgh, PA 15264-3700.

Act— -Share our Mobile Cause campaign link (bit.Iy/PDAHaiti). Learn how you and your congregation can help families who have lost everything in the devastation. Stay informed and like us on Facebook(facebook.com/PDAcares), download resources at pda.pcusa.org/pda/resources and share updates with your congregation.

PRAY— As this earthquake continues to cause destruction and loss of life, please pray with us that the communities affected by this event and those offering assistance will be strengthened, have their needs met and be reminded of the hope found in God.

Call to Prayer and Action for Afghanistan

Call to Prayer and Action for Afghanistan Stated Clerk urges US to provide 'constructive, humanitarian support' for people of Afghanistan More than 100,000 people have lost their lives over the past 20 years as a result of the war in Afghanistan. Adults, children and those fighting to protect their freedoms have perished in yet another senseless attempt to clamp down on human rights and justice for all. As we sit in the comfort of our own homes, we have watched in horror what is happening to the people of Afghanistan in recent weeks. Thousands of families and individuals, crowding onto the tarmac in Kabul, racing to board or cling to the sides of U.S. military planes in an attempt to escape a country ravaged by violence. In recent days, the violence has taken yet another turn as factions fighting against the Taliban and U.S. resort to suicide bombings to exact as much destruction against our military, others on the ground striving to protect those wishing to leave, and those fleeing the violence. Again, more lives lost. What has been gained? Very little if you talk with those who have lived in the midst of war. As the U.S. prepares to withdraw, there is a great deal of uncertainty for those left behind.    While we are happy to see the end of U.S. military occupation in this region, we do hope and pray that our leaders from both sides of the political aisle continue to seek constructive, humanitarian ways to help the Afghan people in their time of need. It is time to end the political blame game for all that has gone wrong in this 20-year commitment and find true solutions that save lives and protect individual rights, especially for women and girls. We continue to pray for the safe evacuation of both citizens and our brave military personnel. Many have made the ultimate sacrifice to save those in danger. We pray for our national and international leaders as they work to find solutions to the crisis in the region. We pray for our president and the Department of Homeland Security as they oversee relocation efforts for the thousands of Afghan residents without a home. We pray that our nation opens hearts and arms to families that have nowhere else to go. Rev. Dr. J. Herbert Nelson, II Stated Clerk of the General Assembly Presbyterian Church (U.S.A.) A Lament and Prayer for Afghanistan The tragic news coming from the beautiful and culturally diverse country of Afghanistan has disturbed us profoundly as we grieve the continued loss of life, peace and stability, hopes and dreams. In this time, we as people of faith turn to the practice of lament that guides our prayers in this time and leads us to action. We lament the lives that have been lost … of civilians, military personnel, and aid workers. We lament the families fractured and torn apart. Those whose homes have been destroyed and those who have left their homes filled with fear. We lament for those who feel helpless, hopeless, abandoned and trapped within their own country. We lament the devastation that has come and the fears of what might be. We lament that 20 years of military intervention has not provided the peace and stability that was promised. And in our lament, we are led to confess our hubris that our plans would be solutions for others without listening to them. We confess our belief and trust in militarism as the solution to all problems. And we confess that we have, and continue to, put our interests and security above that of the people of Afghanistan and other nations. Our lament leads us to recognize how much we still do not know, and have chosen to not understand, and the need to listen to the voices of the people of Afghanistan as they share their hopes and dreams for their country. We remain in prayer as we seek God’s guidance, compassion, and love. A Prayer for the people and nation of Afghanistan  August 2021 God of Compassion, God of Peace, God of Justice: You, O God, are the One who sees the forgotten speaks with the Voice of the silenced remembers and redeems those who are lost and without hope. Hear our prayer for the people of Afghanistan, those fleeing for refuge, those left behind, those who cannot find a way out. The faces of the people of Afghanistan, filled with desperation and fear, haunt us. The horrors the world has witnessed in the catastrophic collapse of a nation’s government take us to a place of sorrow beyond words.  The scenes from the airport as evacuations continue, the cities and small communities, relentlessly overtaken, and the knowledge that we in the United States are a part of this story, are painful to bear. We see the anguish of your suffering people and recognize a wrenching feeling deep in the pit of our own stomachs:  for we know we share responsibility for what is unfolding and what is being lost.  We have made choices as a nation to engage with Afghanistan, all these long years, and though we prayed it would be for good, we know that the legacies of nations with power have often caused harm when good was hoped for. We confess to you that our best efforts are still mired in sin. We ask for your forgiveness.  Help us to learn, and to amend our ways. We acknowledge those in military service in our nation, in Afghanistan, as well as in other places who gave their lives, their health, and their futures, hoping to be a force for the protection of the vulnerable and the well-being of the people of Afghanistan.  We lift up their sacrifice, their trauma and their sorrow to you, O God who heals every wound.  Most of all, God of the refugee, God of the journey, Protector of the helpless, we lift to you the people of this fragile and wounded nation; those who remain at home, and those who flee. Guard them and shelter them under the shadow of your wings. Lead them to safe haven and give them the strength and hope to begin again. Give us the grace to walk alongside them. Help us, God of justice and mercy, to turn our own anguish into deeds of love and welcome. Help us not to turn away, nor to forget.  Open our hearts, our doors, our communities, our churches and neighborhoods to receive, to honor, and to bless. Make us instruments of your peace, for the sake of your son, Jesus Christ, our Love and our Redeemer.   Take Action for the People of Afghanistan From prayer we are led to act with humility, recognizing we cannot act alone. We need to listen and learn what actions are needed and helpful, and that our action does not absolve us of our past mistakes, but can lead to justice for those who remain. In so doing, we choose to welcome and stand with those who as a last resort have fled the only home they knew as they resettle in other lands including the United States. We choose to not forget and abandon the people of Afghanistan, but to urge policy makers towards just actions for the sustainability of this extraordinary country. Pray: Join the call to prayer by using the prayer and lament for Afghanistan in your church or Sunday school class.   This hymn by Carolyn Winfrey Gilette was written for the people of Afghanistan.  It was written to a gentle, peaceful tune for a people who need gentleness, peace, justice, and human rights in their land (as we all do, in our lands).  Permission is given for free use of this hymn, including in online worship services. Use this resource from our partners at Lutheran Immigration and Refugee Services (LIRS) for guided prayer with the ecumenical and interfaith community.  Act: Tell Congress to Urge the Administration to Expedite and Expand Access for Afghan Refugees Support: Support PC(USA) partners providing humanitarian assistance on the ground in Afghanistan and the region through the PDA U.S. Refugee Emergency Fund. Presbyterian Disaster Assistance will provide financial aid to ACT Alliance members for their humanitarian work inside Afghanistan as well as in the neighboring countries as the needs are identified and programs are expanded. Welcome: Thousands of Afghans have arrived in the U.S. already this year and many more are arriving.  They need basic furniture and supplies to set up apartments, rental housing, financial support and volunteers. PDA has general information on how refugee resettlement works and how churches welcome refugees here. Learn: Encourge your church or community to learn about the refugee experience by watching “To Breath Free” To Breathe Free follows the 5-year journey of a Syrian family fleeing the war in Homs to the refugee camps in Jordan and starting a new life in Washington, D.C. Using home movies, phone video, family photos and interviews with family members and former refugees, this short documentary gives an intimate and unique perspective not seen in current media reporting on the refugee crisis. For additional information on the Afghan refugee situation from PDA please click here.

WCC NEWS: During dialogue on COVID-19, WCC acting general secretary reflects on “our shared vulnerability—and shared fate—as one humanity”

Speaking during a 30 August “Dialogue on COVID-19 and Consequences for Global Multilateral Cooperation,” World Council of Churches (WCC) acting general secretary Rev. Prof. Dr Ioan Sauca offered a keynote speech focusing on urgent efforts to sustain a global, multinational dialogue and cooperation in the aftermath of the COVID-19 pandemic. Everyday life on a street in Brazil, July 2021. Photo: Marcelo Schneider/WCC 30 August 2021 The conference was hosted by The Foundation Dialogue for Peace and moderated by Norway’s former prime minister, Kjell Magne Bondevik.  Along with the WCC, representatives from the Muslim World League and the World Health Organization shared experiences with ministers, ambassadors, politicians, peace associations and others.  Sauca’s presence stemmed from the WCC receiving a Bridge Builder Award for its work on interreligious cooperation in the interests of peace. Other keynote speakers were H.E. Dr Muhammad Bin Abulkarim Al-Issa, secretary general of the Muslim World League, who also received the award this year, and H.E. Dr Tedros Adhanom Ghebreyesus, director general of the World Health Organization, who received the award last year, and H.E. Jagan Chapagain, secretary general of the International Federation of Red Cross and Red Crescent Societies, and H.E. Børge Brende, president of the World Economic Forum.  “In fact, of course, it is the pandemic that brings us together today, even as the virus and its variants run rampant and the enormous task of vaccinating, protecting and aiding the population continues to tax our health and economic systems,” said Sauca. “But let it never tax our courage and fortitude!” Sauca offered a summary of how the WCC, as a global fellowship of Christian churches with over 550 million members, responded to the pandemic. “Given that staff travel and conferences were suddenly out of the question, much of the effectiveness of the WCC in this period stemmed from its rapid development of communications vehicles that could share stories from the wider fellowship, report on COVID-related initiatives, and highlight good practices among churches responding to COVID-19,” he said. “They have brought to light concrete examples of how faith communities are and can be adapting.” The WCC’s identity as a fellowship united in prayer and service has been made more visible through the publication of daily morning prayers and weekly prayer texts contributed by members of the fellowship, Sauca explained.  “As you can see, this time has been one of learning anew about the role of the WCC and the global fellowship in the unfolding drama of our planet and its people,” Sauca said. “A measure of our accountability—as individuals and as churches—lies in our openness to being transformed ourselves and to transforming our world by meeting the concrete needs of others.” It is our responsibility and call to contribute multilaterally to alleviate this pandemic, Sauca said. “Fundamentally, I think, we have learned the real importance of our work, not in spite of our faith identity but because of it,” he said. “Our identity as a global Christian fellowship enables us to address this crisis in its deeper cultural and spiritual dimensions, to break barriers and build bridges, and to work relationally.” Religious organizations are uniquely positioned for practical local engagement with issues of healthcare, Sauca said. “The fundamental learning from this pandemic has been of our shared vulnerability—and shared fate—as one humanity,” he concluded. “We now feel more keenly the fragility of human life—indeed, of all life on this planet.” Full speech: Dialogue on COVID-19 and Consequences for Global Multilateral Cooperation - by Acting General Secretary Rev. Prof. Dr Ioan Sauca, 30 August 2021 Access free press photos from the event See more

The World Council of Churches promotes Christian unity in faith, witness and service for a just and peaceful world. An ecumenical fellowship of churches founded in 1948, today the WCC brings together 349 Protestant, Orthodox, Anglican and other churches representing more than 550 million Christians in over 120 countries, and works cooperatively with the Roman Catholic Church. The WCC acting general secretary is Rev. Prof. Dr Ioan Sauca, from the Orthodox Church in Romania. Media contact: +41 79 507 6363; www.oikoumene.org/press Our visiting address is: World Council of Churches 150 route de Ferney Geneve 2 1211 Switzerland

Change.org - Save DEWITT, AR KROGER

Save DEWITT, AR KROGER

Charlotte Purdy started this petition to Kroger and it now has 2,962 signatures

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Dear Mr. McMullen,   As a community member in DeWitt, AR, I am writing to you to express the importance of keeping our local Kroger grocery store open. I understand that times have changed, wages have increased, and the supply chain is in a bind, but the NEED of this store in our community outweighs everything! We aren’t just wanting this store to stay open, we desperately NEED it to remain open. I hope, after you read my email, that you will take into consideration the idea of leaving our store open. Not just for the city of DeWitt and its citizens, but for the outlying communities as well.   Arkansas County is limited on grocery store chains, and I can testify that Kroger receives more business than you may realize. We may be small in population for the city, but if you look at the overall population of Arkansas County, which is approximately 17,914, you will understand the importance of this grocery store. Although it may be small in square footage, it is HUGE in customer sales and need. Kroger-DeWitt serves more than just DeWitt. It serves Gillett, Tichnor, Bayou Meto, Reydell, Almyra, St. Charles, Crocketts Bluff, Stuttgart, and other outlying communities. People travel to our local Kroger from all these communities to purchase their groceries. Why? There isn’t another grocery store with the produce, meat selection, grocery items, and most importantly, customer service in the entire state!    The employees at Kroger go above and beyond to make sure ALL their customers can get what they need when they walk through the doors. They use the local newspaper, social media, and word of mouth to spread important sales and information to the surrounding communities. They stock up on even more grocery items during hunting seasons, as hunters from all across the state, and other states, stop in to buy their grocery items to stock their camps. I have yet to see a hunting season that the store wasn’t packed with hunters and their campers/trailers filling the adjoining large parking lot, simply because they prefer to shop at Kroger!    With the increase in prices, comes an increase in gas costs, and as a smaller community, knowing that added travel expenses will occur due to having to drive further to purchase groceries is something most of the citizens can not afford. I do understand that it is crucial to a business to rake in thousands, or millions, of dollars in revenue each year, but I must remind you that no business will succeed without customers. DeWitt, and all surrounding communities, has the best customer base you will EVER FIND!   The employees at Kroger-DeWitt have been with your company for many, MANY, years. They have weathered every natural disaster, the COVID pandemic, power outages, snow storms, ice storms, and more to ensure that any and every customer had a place to go when they needed groceries. Their dedication and determination for your company far outweighs any other business I have ever known of! Your employees go above and beyond for their customers and that is not something you will find anywhere else!   The community stands behind Kroger and supports them whole heartedly! So many times, community members think of your employees and stop what they are doing to deliver a fresh, hot meal to those who are working. Why? Because your employees always take care of their customers, and YOUR BUSINESS.   I would also like to bring to your attention the youth in our community who will miss out on the opportunity to work with the public while they are in high school, and even after they graduate. These students learn how to manage money, good customer service skills, how to stock and rotate products, and so many other IMPORTANT life lessons that will be taken away when you shut the doors of our local Kroger. Kroger-DeWitt has always done an outstanding job preparing our youth to be productive community members, and now, with the thought of those opportunities being thrown in the wind because the store isn’t making millions for you, blows my mind.  Call me greedy for being so concerned about our community losing Kroger, and I’ll tell you I SURE AM! Why? Because I am passionate about our community and the city of DeWitt. I do not want to see it become another ghost town. The revenue that will be lost when the doors close will put our city into a financial strain in my opinion. That will result in putting a strain an our local public school and college campus. You see, it’s more about "keeping one store open." It’s about keeping an entire county ALIVE.    I plead with you, please don’t take the life from our city. Your employees and customers DEPEND ON YOUR STORE! I will be more than glad to get a petition signed by community members who feel the same! You will be floored to see how many names we can get! I promise you!  So please, although I know you have played this through your mind, please reconsider this and see it from the communities standpoint. Don’t take away a business that keeps the county going strong! Instead, look at ways to improve it and expand it to allow you the opportunity to offer a wider selection of items and you will be amazed at the profits that start pouring in!    I would be more than happy to talk with you over the telephone, or in person, should you be willing to listen. (870) 509-1575   Sincerely,   Charlotte Purdy Concerned for our DeWitt community KEEP KROGER OPEN!

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Change.org - Punishing the middle class

FAFSA, the main source of financial aid for millions of college students will be decreasing aid—particularly for middle-class families. The new changes help the poorest families overall, but they include one provision that eliminates a discount for families with multiple students in school. Matthew started his petition because he doesn’t believe the middle class should have to struggle to afford college. Join him in calling for a reinstatement of the provision that allows families to give their children the education they deserve—no exceptions. Help American families afford college by opposing 2022 FAFSA change 7,718 have signed matthew carpenter’s petition. Let’s get to 10,000!

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The biggest financial concern for millions of American families is paying for college.  One of the new FAFSA rules will exacerbate this problem for any families that will have multiple children in college at the same time.  Currently, families receive a discount if they have multiple children in college at once.  The new FAFSA rules will eliminate this discount and will effectively DOUBLE the amount families with multiple children will be expected to pay for college.  Most families already struggle with affording college; this new rule will be a crushing blow for the MILLIONS of families that will be negatively impacted each year. The good news is that the solution is simple!  We just need the Dept. of Education to keep the current rule for siblings in place, and NOT make this change that is currently scheduled to take effect on Jan. 1, 2022. Even with the current FAFSA rules, affording college is still the biggest financial concern and challenge for most families.  This new rule will make affording college for families that have multiple children almost impossible.  Please help us make college more affordable for millions of Americans each year by opposing this rule change.  Don’t miss our New York Times feature here: Changes in FAFSA May Reduce College Aid for Some Families

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