Hellman Foundation’s Post

Stop 👏 Raising 👏 Awareness 👏 Y'all, awareness does nothing. I am aware that it is hot outside. I am aware that I would like to take a nap. I am aware that my kids would really like for me to make dinner tonight. Awareness changes nothing. The few precious seconds you have of people's attention must get them moving. Use your messaging to make meaningful change. Skip the fluff and ask people to DO SOMETHING ALREADY. #StopRaisingAwareness #NonprofitMarketing #NonprofitFundraising #Nonprofit #NonprofitLeadership

#WealthPilotCares – Giving back to our community is a core value at WealthPilot Financial. Each month we will be making a donation and highlighting a charity that is making an important difference in the world. In July, we supported Propel a Cure. Propel A Cure’s primary purpose is to raise funds for innovative research that will identify the underlying cause of Crohn’s disease, the first step in the development of a cure. https://bit.ly/3OurEDK

September is Leukodystrophy Awareness Month. I don’t believe I’ve posted before & this is personal in nature, but I feel the need to raise awareness wherever I can. Leukodystrophies are a group of rare genetic diseases that many are fortunate to have not heard of, much less know someone with one of these nasty diseases. Within the past 7 months, I have unfortunately become well acquainted with them in general & with Hypomyelinating Leukodystrophy more specifically. Simply put, Leukodystrophies are a group of progressive, metabolic, genetic diseases that affect the nervous system. Each type of leukodystrophy (there are over 40) is caused by a specific gene mutation that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain. (The myelin sheath is the protective covering of the nerve & nerves can’t function normally without it.) Each type of leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems. (Combined from a few different definitions when googling.) My grandson, Liam, was born on 12/22/22, following a healthy, full-term pregnancy to my stepdaughter & her husband. In early February of this year, he was admitted to Nationwide Children’s Hospital for failure to thrive. He endured more medical testing than any 6/7 week old should have to. A week after he was admitted, following a MRI of his brain, we had an answer. He was officially diagnosed with hypomyelinating leukodystrophy type-3 on February 13th. So much about Liam’s life is an unknown. This is a very rare disease (his mom was told that there are currently less than 15 known cases with his same gene mutation, he is the rarest of the rare), therefore there is not an abundance of studies & research. We know he will be on a feeding tube for life. We know his sight is not good. He responds to a bright light in a dark room. Beyond that, we don't know what he can see. His hearing is still an unknown. It’s doubtful he will be verbal, that he will sit up on his own, much less crawl or walk. At first, we were told it was a good sign he wasn’t having seizures. That didn’t last long. He has since be hospitalized three times specifically for seizures, including infantile spasms - is a rare form of epilepsy. What is known - no child with this has lived past the age of 5. There is not much that can be done for our little guy beyond symptom management. Hunter's Hope Foundation provides much needed support and resources for families traveling this road. Straight from their website “Hunter’s Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for Leukodystophies and Newborn Screening for EVERY CHILD. EVERY TIME. EVERYWHERE®”. They have been a godsend for my stepdaughter, providing her with so much support. Alex has set up a page to help with their fundraising. Please consider donating. https://lnkd.in/gPhr2Ej6

Every once in a while I like to share articles I have written over on Medium. This one is not a fundraising or recruiting article, but one that is personal. I'm astounded (I don't think I've used that word in a long time) buy the amazing, kind, supportive, responses I have gotten from this article. #nonprofits #fundraising #recruiting https://lnkd.in/efpgDRk5

Dear Community! Today the Ideological Guard Dnipro Charitable Foundation officially launches a programme to support children's medical institutions in Ukraine with the project "Towards the New Life". The programme's vision is that all children in Ukraine, regardless of their location, will have equal access to innovative medical equipment that, combined with the experience of Ukrainian doctors, will create new opportunities for treatment and life support for patients. "Towards the New Life" is our first major fundraising campaign to fully meet the needs of children with cystic fibrosis receiving care in Dnipro. The average life expectancy of patients with this diagnosis in Ukraine, according to open sources, does not exceed 24 years, and some clinical cases suggest that children sometimes do not even live to adulthood. At the same time, the situation in EU countries is much better - there are cases where life expectancy is 50 years or more. When we talk about addressing the need comprehensively, we are talking about a systemic solution. This means that we work together with specialist doctors and together we formulate a plan to meet the needs, covering the entire cycle of medical care, depending on the problem we are trying to solve. Today, we ask you to support our initiative and help children achieve more. Let's build the road to a new life together. Link to the project - https://lnkd.in/dpn3MXEH Informational release - https://lnkd.in/db5hGnuF

Fiscal Sponsor Roundup: Many 501(c)3 organizations are making an exponential impact as fiscal sponsors. Check out our blog to see 11 organizations excelling in recent years: https://lnkd.in/gVc2YCGj #GetRibbon #FiscalSponsorship #SocialImpact #Nonprofit #Philanthropy

Meet Kaiden! Kaiden was born with cystic fibrosis, a condition affecting the lungs and digestive system, Kaiden's journey highlights the progress in medical research. His dad, Jason, shares their story and the impact of Cystic Fibrosis Canada / Fibrose kystique Canada's research funding. Discover Kaiden's inspiring story in our video and learn how supporting HealthPartners' charities makes a real difference in lives like his:

Another successful year for Europe's largest NPO for Dup15q syndrome! We continue our mission to provide i) family support, ii) specialized clinical care, iii) research and iv) awareness for the rare disease Dup15q (15q11.2-q13.1 multiplications). We are so excited to have such a great and active Dup15q community and look forward to our next milestone with several research projects in the pipeline. All this is only possible thanks to our generous donors and grant providers. If you can, please consider a donation to improve the lives of those affected by Dup15q: https://dup15q.de/spenden/. #dup15q #autism #epilepsy #rarediseases Dup15q Alliance University Hospital Heidelberg (UKHD) EURORDIS-Rare Diseases Europe Erich Irlstorfer Eva Luise and Horst Köhler Foundation for People with Rare Diseases ACHSE e.V. Allianz Chronischer Seltener Erkrankungen e.V.

Looking forward to joining Miles for Migraine's Walk, Run, Relax event this Sunday! Migraine is the second leading cause of global disability, yet it is one of the most stigmatized diseases in the world. This has a cascading effect on those with migraine, resulting in substandard care, less school & workplace accommodations, fewer government policies that protect people with #migraine, and less specialists trained to treat the disease. Everybody knows someone with migraine. Maybe it's you, maybe it's a family member or a good friend. One in four households have migraine. But have you ever heard of a major fundraising event for the disease? Have you ever attended a gala or a luncheon for migraine? Have you ever seen a t-shirt where a portion of proceeds benefit migraine research? Since migraine is a spectrum, it is incredibly misunderstood, even by those who have the disease themselves. So people with episodic migraine believe that their infrequent attacks are random events rather than an ongoing, life-long disease that can be passed down to their children. While those on the severe end of the spectrum are unable to make ends meet. Only 37% of people with chronic migraine are able to work full time. People with migraine experience disabling neurological symptoms that range from nausea and vomiting to vertigo, impaired vision, muscle weakness, aphasia, slurred speech, and for some even paralysis. Does this sound like the bad headache portrayed in media? Only 50% of the 40million Americans with migraine seek treatment for their disease. There currently are just 700 headache specialists (neurologists fellowship trained in migraine and headache diseases) to treat the 40m people with migraine. Help me raise money for two of these critical programs (Mt Sinai and Montefiore hospitals in NYC) so that more people with migraine can get the critical care they need to manage their disease. Migraine is not just a bad headache. It is the dysfunction of the nervous system. People with migraine deserve better care and better access to treatments. The only way that we'll get there is through better advocacy programs and by teaching more people that migraine is a neurobiological disease. It's not your fault, it's not because of something that you did or ate, it's not because you're lazy or stressed. Migraine is a genetic predisposition and it deserves better medical intervention. Donate at the link: https://lnkd.in/ewteivNb

Reminder that you can double your impact by donating during #NTXGivingDay and help meet our 10K matching challenge TOMORROW from 6am-midnight! Read more about the impact of Resource Center in this blog post from My Sweet Charity https://lnkd.in/gczB3eAk