FH Europe Foundation’s Post

Sickle Cell Awareness Day: Together We Can Make a Difference 🎗️ Today, we at Shinon Healthcare join the global community in raising awareness for Sickle Cell Disease (SCD). This inherited blood disorder affects millions, causing severe pain, fatigue, and other serious health complications. How You Can Help: •Educate: Increase your understanding of SCD and spread the word. •Support: Donate to research organizations working towards better treatments and a cure. •Get Involved: Engage in community events and online campaigns to show your support. By coming together, we can improve the lives of those living with SCD and push for advancements in research and care. Let's stand united in our efforts to bring hope and support to the Sickle Cell community. #SickleCellAwareness #ShinonHealthcare #SickleCellDisease #HealthcareAdvocacy #HopeForACure #SickleCellWarriors #ShinonHealthcare #ShinonGlobal #bridgeofhope #committedtoexcellence #trustedpartner

Pinch Me! Some milestones change the course of your life, and today is one of those days. With the announcement of the Cycle 3 grantees for the Chan Zuckerberg Initiative’s Rare As One Program, our foundation has been selected to participate in the Rare As One Program and awarded a 5-year, $800,000 capacity-building grant! Back in 2021, we were one of 20 organizations to receive a Cycle 2 Rare As One grant of $50,000, and we made a strategic decision to invest that money into the growth of our organization. We knew we had to increase our capacity if we wanted to accelerate our path toward a treatment for our kids. In 2023, we used that investment as seed funding to hire our first full-time employee - Gabrielle Rushing, Ph.D., a powerhouse who now leads our science program. Today, I am overcome with emotion and at a loss for words (if you know me, you know I always have too much to say). When I found out we were selected, I sobbed. Since starting this foundation, I’ve had more sleepless nights than during my entire career as an attorney. I know how impactful the CZI RAO program has been for other organizations: advancing research, organizing patient communities, catalyzing collaborations, raising crucial funds, and launching clinical trials. And now, we’re part of that! Investing in growth is scary, especially for rare disease organizations like ours. We are used to squirreling away donations, only wanting to spend our nuts on research. What we see time and time again from organizations who have brought treatments to their children, is that you also have to invest in collaboration, building research networks, bringing researchers and families together, and ensuring that the patient voice is always at the heart of everything. That’s how real progress happens. Collaboration is the heart of innovation! To everyone who supports us on this journey—volunteers, donors, advisors, friends, family, and fellow rare disease advocates—thank you from the bottom of my heart. We can't do this work without you. I can’t wait to meet the other Cycle 3 grantees and start working together to bring treatments to our kids faster. #CZI #RareAsOne #OCNDS #PatientVoice #CollaborationIsKey

What is Pemphigus/Pemphigold? Pemphigus and pemphigoid are rare autoimmune diseases characterized by blistering of the skin and mucous membranes and often affects people of Indian origin and Ashkenazi Jewish origin. In pemphigus, the body's immune system mistakenly attacks proteins in the skin and mucous membranes, causing blisters to form. Pemphigoid, on the other hand, involves the immune system targeting proteins that help attach the top layer of skin to the lower layers. For individuals diagnosed with pemphigus or pemphigoid, the journey is often fraught with challenges. The sudden appearance of painful blisters, coupled with the uncertainty of a rare condition, can be overwhelming. Treatment typically involves immunosuppressive medications to suppress the immune system's response and reduce blister formation. However, finding the right treatment regimen can be a trial-and-error process, and managing the side effects of these medications adds another layer of complexity. Physically, the symptoms of pemphigus and pemphigoid can significantly impact daily life, from difficulty eating and speaking to limitations in mobility due to blistering. Emotionally, the visible nature of the condition can lead to feelings of self-consciousness and isolation. Despite these challenges, individuals diagnosed with pemphigus or pemphigoid often find strength in connecting with others facing similar struggles. Through the International Pemphigus & Pemphigoid Foundation, they can find understanding, encouragement, and resources to navigate their journey with greater resilience. While living with pemphigus or pemphigoid presents its share of obstacles, many individuals find hope in ongoing research efforts aimed at better understanding these conditions and developing more effective treatments. With perseverance, support, and access to quality healthcare, those diagnosed with pemphigus or pemphigoid can strive towards a better quality of life despite the challenges they face. Support International Pemphigus Pemphigoid Foundation and learn more here: https://lnkd.in/d5FMeNvA #HalifaxWest #WinTogether #capitaladvisory #MandA #restructuring #operatingadvisory

Only six (6) seats remain!! Secure your seat today!!! Burgundy/Red, Black, and/or Gold semi-formal attire requested …FGH's Inaugural "Keep SEALing in Hope"Sickle Cell Disease Awareness Banquet - https://lnkd.in/ebvFXBYZ This is a FREE awareness event for all persons/families affected by sickle cell disease, those advocating for awareness, and those wanting to be more informed. Donations are appreciated and can be made at www.fourgivinghearts.org! Join us for great entertainment, food, and information! Four Giving Hearts supports various causes. Many of our efforts coordinate with the assigned awareness day, week, and month for each cause, etc. We, however, advocate for sickle cell disease (SCD) and sickle cell trait (SCT) awareness year-round. Why SCD? We aim to educate those near and far about SCD in memory of RJ McKnight, one of the hearts in “Four” Giving Hearts, and ALL warriors. "Sickle cell disease (SCD) is a common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. SCD can lead to lifelong disabilities and reduce average life expectancy" (cdc.gov).1 Learn more about FGH and sickle cell disease- www.fourgivinghearts.org. 1. "About CDC's Work on Sickle Cell Disease" https://lnkd.in/eki8jrdN. Note- As always, please consult your medical provider before making any changes to your health plan. Focusing on 1. Health 2. Family 3. Education and 4. Community! We foster “for” giving hearts and responsible citizenship. #FGH #fourgivinghearts #RJ #science #sicklecell #sicklecellwarrior #sicklecellawareness #sicklecellanemia #sicklecellawareness #SickleCellSucks #sicklecelldisease #sicklecellstrong #sicklecellmatters #sicklecellfighter #SickleCellAnemia #sicklecelllifestyle #sicklecelltrait #sicklecellwarriors #sicklecelltreatment

On August 17th, I will be participating in my fourth Pedaling for Parkinson's event in Prince Edward County. Parkinson's disease is in my family. My Father (now deceased) lived with Parkinson's for several decades and now one of my brothers has it. Strangely, Canada has the highest rate of Parkinson's disease in the world. And sadly, the incidence of Parkinson's disease is on the rise and there is no cure. Pedaling for Parkinson's is a cycling event that was created to raise awareness about Parkinson's and raise money for research.  If you'd like to donate, and we'd be very grateful if you did, please click on the link below.  https://lnkd.in/gCV82c6H What is Parkinson's Disease?  Parkinson's is a neurodegenerative disease. Movement is normally controlled by dopamine, a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die, the symptoms of Parkinson's appear. Currently, there is no cure. The need is only increasing. More than 25 Canadians are diagnosed with Parkinson's every day; more than one person every hour. By 2031, the number of people living with Parkinson’s in Canada will more than double. Your support fuels the increasing need for research to improve quality of life and ultimately find a cure. https://lnkd.in/gx4CyYfn

Join us for an important livestream with Dr. Tony Hampton ( / @drtonyhampton ) as we discuss the urgent state of metabolic health in America and the upcoming Metabolic Revolution Rally in Washington, D.C. on October 13, 2024. Human suffering: • Some 93% of American adults are not in optimal metabolic health, meaning that they have at least one symptom and/or are taking medication for diabetes, heart disease, or obesity. • Nearly 43% of American adults were obese in 2016 (the latest available government data) vs.12-13% in 1965 • People with diabetes suffer limb amputation, kidney failure, blindness, and heart disease —a slow, painful death over many years. LEARN MORE, JOIN THE RALLY, DONATE: https://lnkd.in/gDJHDQ36 In this livestream, we'll highlight: The shocking statistics behind America's metabolic health crisis. Inspiring stories of people who have reversed chronic diseases through lifestyle changes. Why the Metabolic Revolution Rally is pushing for policy changes and how grassroots movements can make a difference. We'll also share how you can support this vital cause through donations and participation, with a live Q&A to answer your questions. Let’s rally together to fight chronic disease and reclaim our health! Don’t forget to mark your calendars and spread the word! LEARN MORE, JOIN THE RALLY, DONATE: https://lnkd.in/gDJHDQ36

ALS MUST STOP - this campaign SAVES LIVES PLEASE HELP us to raise AWARENESS and FUNDS for the most DEVASTATING & INCURABLE DISEASE that continues to plague mankind! ALS, for Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig's disease, is a progressive neurodegenerative disorder that gradually leads to the paralysis of the entire body, ultimately resulting in the weakening and stopping of lung function. About 80% of patients will die within 2 to 5 years after diagnosis, while 50% in 2 years or less. We still do not clearly know the root cause of ALS nor how to effectively slow or stop its progression! Over 1,000 Canadian and 10,000 American people will be diagnosed with ALS in 2024 - a death sentence! While 4,000 Canadians and 40,000 Americans struggle to live with this devastating disease every year. Day to Day living with the disease is horrific as you progressively lose the ability to use your hands & arms, walk and breathe normally - not much of a life worth living most days! For more details checkout: https://lnkd.in/g2Se4sfw FUNDRAISE - expedite a cure! Please purchase tee-shirts from https://lnkd.in/gT3w6TWX for your entire company, office, department, social group, family, friends, neighbours,….. The funds from the shirts/ hoodies/ merch will be directed toward research, as recommended by the ALS Super Fund’s advisory board. AWARENESS - help me to amplify this! Now tell everyone in your network and on your social media channels about the initiative! Have your team wear the tee-shirts, take pictures of the front & back then post on your social media sites using #EndALS #ALSAC. Please post and repost between the 1st to the 14th day of each month - let’s get noticed to raise awareness of this horrific disease! Please include a link to where others can get their shirts, let’s get everyone involved CHALLENGE OTHERS in your industry to also get involved! Tell everyone that ALS is incurable and we need a cure! LET'S GET THE WORD OUT ABOUT ALS! HELP US TO AMPLIFY THE MESSAGE! Let’s rally around a cure! Me and 44,000 other people NEED YOUR HELP!! Over 11,000 people will die of ALS in 2024 - DO NOT let it happen in vain! Take action now!

April is Parkinson's Awareness Month 🌹 Parkinson's disease is a progressive, degenerative condition of the central nervous system with an unknown cause and no cure. Many people consider Parkinson's to be primarily a movement disorder, but the reality is that there are also many non-motor symptoms that significantly impact quality of life. There are over 200,000 people living with Parkinson's in Australia with 37 new patients diagnosed every day, and these numbers expected to increase as our population ages. Researchers such as A/Prof Lyndsey Collins-Praino are working hard to better understand how Parkinson's disease develops and target both these types of symptoms, to find better treatments and ultimately a cure for this disease. Donate to join the fight for a cure and learn more about current research here: https://lnkd.in/gA4q_9bw #Parkinsonsdisease #Parkinsonsresearch #ParkinsonsAwarenessMonth #fightforacure #donatetoday #makeadifference #tipoftheiceberg

#ALS/#MND Day Comes and Goes with Only 1 #Copay Assistance Fund Open Another disease awareness day provides another disturbing window into how thin the #copayassistance net for needy patients is. About ALS and MND: #AmyotrophicLateralSclerosis is the best known of a group of #rarediseases called #motorneurondiseases. MNDs are neurologic diseases that lead to progressive motor neuron loss. MNs are the cells that control muscle activity; they are necessary to walk, talk, breath, and swallow. Sadly, many MNDs are fatal. More common in men, MNDs typically first strike between the ages of 50 and 70. The incidence of ALS, the most common MND, is about 2 in 100,000. Almost Nowhere to Turn for Help: I always look on disease awareness days for what assistance is available to newly diagnosed patients. It’s usually a pretty depressing exercise, and it was this time, too, unfortunately. My last review of the 9 established copayment foundations revealed that 8 either had no available fund or, even though a fund existed on paper, it was closed or otherwise unavailable to patients in need. That’s right. Only 1 fund was open to patients. The safety net for these patients is literally hanging by a thread. #lifesciences #charitycare #charity #pap #patientassistance #costsharing