Last week, we hosted the 15th annual Guardian Society Luncheon, celebrating the generosity of donors who create lasting legacies through their estate plans. More than 80 donors and guests joined. They learned about the impact of their donations on new oncology treatments and the art and music therapies that support kids during treatment. To learn more about the Guardian Society or our planned giving opportunities, please email Tamara at tsperling@childrensnational.org. This commitment to Children's National Hospital will help improve the health and well-being of children today and for generations to come.
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🚵♂️ Meet one of our returning riders: Terri Gelberg! Terri shared with us why she rides for Team CHIbra: "I am proud to ride with Team CHIbra once again, recognizing the vital importance of supporting research for hyperinsulinism. This ride is especially meaningful for me to ride alongside, and honor, Dr. Charles Stanley. Dr. Stanley's groundbreaking work significantly advanced the understanding and treatment of hyperinsulinism during his career. By supporting this cause, we continue to build on his pioneering efforts, honor his legacy, and make a difference!" You can support Terri's fundraiser for HI research at https://lnkd.in/eXEiFPGa 🚲️ The Million Dollar Bike Ride is tomorrow, June 8 in Philadelphia, PA, and for the 11th year, we are raising funds for congenital hyperinsulinism research! ‼️ 💙 Your donations to CHI this month will go even further - The University of Pennsylvania will match the first $30,000 of our donations. CHI is raising funds to address the critical need for research for diagnostic tests to increase timely diagnosis of HI, tools for better management, new treatments, and, one day, a cure. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease
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Fundraising can be challenging but critical to ensuring program services are delivered. Understanding what matters to your donors and having open conversations with them about the need and your desired outcomes is the key to success.
Developing a full understanding of your donor base is a great way to ensure your fundraising goals remain realistic. Read more at https://hubs.li/Q02vB5750 Post Written By: Albert Reyes of Buckner International, Christina Allrich of Beta Gamma Sigma, Vicki Burkhart of The More Than Giving Company, Randy Wong, Ed.M, CFRE of Hawaii Youth Symphony, Jonathan Prosser of Compassion UK, Erin Thibodeaux-Davison, MBA (She/Her) of Big Brothers Big Sisters of Southwest Louisiana, Matthew G. of Spur Local, Cherian Koshy of Kindsight, Liz Salguero of Circle of Care for families of children with cancer, Nicole Suydam of Goodwill of Orange County, Amina Wattoo Kasuri of The Lighthouse, Jamee Rodgers, PhD of Urban Neighborhood Initiative, Sherry Quam Taylor of QuamTaylor, and Kimberly Lewis of Goodwill Industries of East Texas, Inc.
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The Gift of Life ❤️ In a few short weeks, our second Cardiac Surgical Mission of 2024 is touching down in Ukraine with Global Cardiac Alliance! By donating to CCI, you help ensure that as many children as possible can be treated for life-threatening congenital heart defects, such as 'Chernobyl Heart'. https://lnkd.in/eWV69Y3z
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Today, Barry Falke, our CEO, took time to give the gift of life, and he doubled his effort by giving a Power Red donation for the first time! Thank you, Barry! A Power Red donation allows you to safely donate two units of red cells during one appointment maximizing your impact! Red cells from a Power Red donation are given to trauma patients, newborns, emergency transfusions during birth, people with sickle cell anemia and anyone suffering from blood loss. Ideal types to give a Power Red: O+, O-, A- or B- Learn more about maximizing your donation by giving Power Reds: rcblood.org/3JYQQjA Power Red= Double Your Impact 🩸🩸
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March is #NationalEyeDonorAwarenessMonth! For this week's #FYIFriday, we are sharing five facts about eye donation! 1️⃣ Vision Restoration: Eye donation can restore vision for individuals with corneal blindness, allowing them to see the world again. 2️⃣ Universal Acceptance: Eye donation is accepted by people of all ages and backgrounds. 3️⃣ Longevity of Donation: Corneas can be preserved up to 14 days after donation, allowing ample time to arrange transplantation procedures. 4️⃣ Minimal Disruption: Eye donation is a non-invasive procedure that does not alter the donor's appearance. It can be done without interfering with funeral arrangements or traditional burial practices. 5️⃣ Multiple Lives Touched: One eye donation can restore sight for two people since each cornea can be transplanted individually.
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Biomedical Engineering Student at NOVA SST • Magma Ambassador • RD-Portugal • v-ATPase Alliance
👀 What an eye-opening experience! 🩺After attending the webinar about Diagnosis Of Rare Diseases, by RD-Portugal with The Ordem dos Farmacêuticos, I had the privilege of meeting Ana Rita Moreira and Luis Miguel Oliveira. Dani's parents, a really cute boy who has, unfortunately, been diagnosed with a rare disease caused by a v-ATPase genetic disorder, which causes developmental and epileptic encephalopathy. A condition that has no known treatment, and is very limiting for children. 👫 As strong-fighter parents who couldn't consent to the lack of knowledge and medical support for their child, they founded the v-ATPase Alliance Association, uniting families affected by v-ATPase genetic disorders, and promoting treatment research and development. 🔬 It is with great honor and enthusiasm that I have become part of this research group, aiding in the search for a treatment discovery! In collaboration with RARE-X, we are starting to build an innovative Data Collection Program 📚 that will allow us to advance research , therapy, and drug development. 💊 🙍♀️ This is a really debilitating condition, where children and their families face enormous daily challenges. If you want to help this mission feel free to share this program or give a kind donation. 🤲🏼 https://lnkd.in/dmjT2QZX 🧬 v-ATPase Alliance: https://lnkd.in/dbDMUvZe
We are very excited to publicly share the first snippet of data collected from our v-ATPase Data Collection Program. We're starting to acquire patient data in a systematic fashion to uncover how v-ATPase-related disorders look like and support development of treatments. Although none of this is novel for those who live with this condition every day, the emerging data illustrates how debilitating this condition can be for children. v-ATPase malfunctioning takes a big toll on children affecting almost all symptom domains. This is where we need your help. Our children and their families face enormous challenges daily, and with your generous donations, we can move faster to find effective treatments for them. Please consider making a donation today to support our mission. Thank you! 🙏 https://lnkd.in/dmjT2QZX (cc Angel Aledo-Serrano, Ricardo Morcos, Eva Bernardino, RARE-X, Global Genes, Critical Path Institute (C-Path), Rare Epilepsy Network (REN), RD-Portugal, SERaro.pt)
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You can have your say on proposed changes to the Transplantation and Anatomy Act 1983, which will make it easier for families to share stories about their deceased loved ones who were organ or tissue donors, or recipients. Currently, some families may consider they are at risk of prosecution for publicly sharing information about their deceased family member’s donation or transplant, particularly for remembrance, commemoration, or raising awareness about organ and tissue donation. Changes to the Act are proposed to provide clarity for families to ensure they can speak publicly without fear of being in breach of legislation. Feedback on the proposed changes will inform the Draft Bill. To read the draft documents and provide feedback, visit https://lnkd.in/ga9NBjWK
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🚵♂️ Meet one of our returning Team CHIbra's riders: Dr. Diva D. De León-Crutchlow! Diva is one of the foremost congenital hyperinsulinism experts in the world - she is the Director of the Congenital Hyperinsulinism Center at Children's Hospital of Philadelphia, a CHI Center of Excellence, and is the Lead Clinician of the CHI Collaborative Research Network. You can support Dr. De León-Crutchlow's fundraiser for HI research on her page: https://lnkd.in/ebB-qhbn 🚲️ The Million Dollar Bike Ride is on June 8 in Philadelphia, PA, and for the 11th year, we are raising funds for congenital hyperinsulinism research! ‼️ If you are interested in riding, you must register by June 2nd (see details on our website) ‼️ 💙 The University of Pennsylvania will match the first $30,000 of our donations. CHI is raising funds to address the critical need for research for diagnostic tests to increase timely diagnosis of HI, tools for better management, new treatments, and, one day, a cure. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease
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#Glaucoma is the 2nd leading cause of blindness in the world according to the WHO. The Glaukos Charitable Foundation is making an impact by donating over 6,200 devices to underserved glaucoma patients spanning 45 countries. Learn 4 key facts about glaucoma: https://lnkd.in/gZD9m_b7
Across the globe, we're advancing the treatment of ophthalmologic diseases. The Glaukos Charitable Foundation provides patients in need with access to meaningful, safe, and long-term eye care. Learn more about our philanthropic efforts at https://bit.ly/3tCs0So #Glaukos
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April is #NationalDonateLifeMonth! 🌟 Did you know April is National Donate Life Month? It's a special time to shine a light on the life-changing impact of organ, eye, and tissue donation and to honor the heroes who've given this extraordinary gift. 🌟💙💚 The call for diverse donors is more urgent than ever. A fact from the Mayo Clinic Minute really hits home: "Why diverse organ donors are needed," by Alex Osiadacz (August 15, 2023), tells us that tragically, 17 people die daily waiting for transplants in the U.S. The stats are even more concerning for minority communities - 60% of those waiting are minorities, but they make up just 30% of donors. Working with Gift of Life Michigan, I've seen firsthand the need for donors, especially in the African American community where the need for kidney transplants is great. That's why I'm on a mission to boost awareness and spread the word in the African American community about the power of donation. It's so important for us, especially in the brown and black communities, to step up. Becoming a donor and having those heartfelt chats about life's toughest topics can save lives - maybe even someone you know.🙏 So, let's come together this month and truly make an impact. If you've ever thought about organ donation, talk to your loved ones and consider registering. Your decision could be the miracle someone is praying for. 💖🙏 #DonateLifeMonth #GiftOfLife #OrganDonationAwareness #April #OrganDonation #BeTheChange
Principal at Cebra Consulting, LLC
4moSo very soory to have missed this!