Donor Network West’s Post

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

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

Having FSHD, this summarizes it in a simple way.

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March is Trisomy Awareness Month Children with a Trisomy 13 or Trisomy 18 diagnosis are often viewed by the medical field as "incompatible with life" and not worth fighting for. Many medical facilities will not provide any form of intervention for these children. And will not refer families to doctors that may have more expertise on the diagnosis and life saving measures. At On Angels' Wings, we believe in giving families all of the information about all of the options for their child. Whatever decision fully informed parents make, we will respect and support them through it. But all too often we've seen families be told there are no options, only to find out after they've lost the child they would fight for that intervention could have happened. Giving families no choice due to lack of information is not acceptable. Children with Trisomy 13 and Trisomy 18 ARE compatible with life, and they deserve a chance if it is medically possible and what the family wants to do. OAW will continue to advocate for these children that we believe are worth celebrating, and worth fighting for! You can find Ashlyn's and Eden's full stories on our blog by searching their names: oawphoto.org For more information on Trisomy 13 and Trisomy 18, follow SOFT and Simon's Law. ... #trisomyawarenessmonth2024 #trisomy13 #trisomy18 #trisomyawareness #trisomywarrior #trisomystrong #advocacy #nonprofit #philanthropy #oawphoto #onangelswings #supportservices #griefsupport #grief #griefjourney #griefrecovery #medicallycomplex #medicallyfragile

March is Trisomy Awareness Month Children with a Trisomy 13 or Trisomy 18 diagnosis are often viewed by the medical field as "incompatible with life" and not worth fighting for. Many medical facilities will not provide any form of intervention for these children. And will not refer families to doctors that may have more expertise on the diagnosis and life saving measures. At On Angels' Wings, we believe in giving families all of the information about all of the options for their child. Whatever decision fully informed parents make, we will respect and support them through it. But all too often we've seen families be told there are no options, only to find out after they've lost the child they would fight for that intervention could have happened. Giving families no choice due to lack of information is not acceptable. Children with Trisomy 13 and Trisomy 18 ARE compatible with life, and they deserve a chance if it is medically possible and what the family wants to do. OAW will continue to advocate for these children that we believe are worth celebrating, and worth fighting for! You can find Ashlyn's and Eden's full stories on our blog by searching their names: oawphoto.org For more information on Trisomy 13 and Trisomy 18, follow SOFT and Simon's Law. ... #trisomyawarenessmonth2024 #trisomy13 #trisomy18 #trisomyawareness #trisomywarrior #trisomystrong #advocacy #nonprofit #philanthropy #oawphoto #onangelswings #supportservices #griefsupport #grief #griefjourney #griefrecovery #medicallycomplex #medicallyfragile

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

**Let's turn the world purple for Epilepsy Awareness Day! ** Epilepsy is a common neurological condition that causes seizures. By raising awareness, we can help break down stigma and ensure everyone with epilepsy feels supported. How can you help? Wear purple today! Share this post to spread awareness. Donate to organizations supporting epilepsy research and advocacy. Learn more about epilepsy: Epilepsy Foundation: epilepsy.com Together, we can create a world where everyone with epilepsy feels understood and empowered. #NationalEpilepsyAwarenessDay #PurpleDay #Epilepsy #EndEpilepsyStigma

🚀 Have you ever imagined a universe where legal battles, healthcare access, and political intrigue collide in an epic saga? The Supreme Court's unanimous decision on Trump's presence on Illinois' ballot sparked intense reactions but Governor JB Pritzker emphasized the strategic implications, suggesting Trump's presence benefits Democrats. Walgreens and CVS acquiring federal certification to dispense abortion pills in various states, including Illinois, marks a milestone in reproductive healthcare accessibility, so these diverse stories emphasize legal battles, healthcare access, and political considerations intersecting in today's news cycle. Chicago addresses the surge in overdose deaths by touting Narcan vending machines and harm reduction strategies, but the rising fatality rate has prompted considerations for expanding the Narcan program to battle opioid overdoses. Furthermore, the success of this year's Polar Plunge fundraiser in attracting over 5,000 participants showcases community support for charitable causes despite plunging into icy Lake Michigan waters. So, with various societal issues like addiction response and charitable giving in focus, the dynamic blend of legal, healthcare, and social concerns underscores the multifaceted nature of today's news landscape that impacts communities and individuals at large. How do you think these developments will shape the future of legal and healthcare policies? 💫 Join us in taking charge of your personal brand by visiting us at https://lnkd.in/gUxjfrt7 for 30 days of social media posts and let's make your story one that captivates the galaxy. #LegalRulings #HealthcareAccess #SocialDynamics #PoliticalIntrigue #CommunitySupport #PersonalBrand #StayEngaged 🌌