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Spotlight on The ChadTough Foundation

The ChadTough Foundation

Next in our series of posts about Charitocracy nominees, we have The ChadTough Foundation, nominated by donor brian. They fund research and raise awareness of pediatric brain tumors, with emphasis on Diffuse Intrinsic Pontine Glioma (DIPG).

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

The ChadTough Foundation

The most hated word in the world of pediatric brain tumors is “rare.” “Rare” is the reason there is not enough research being done. “Rare” is the reason there aren’t drugs being developed. “Rare” is the reason there is so little funding. “Rare” is why our kids don’t have more options. The three facts below negate the claim of “rare”:

  • Cancer is the number one disease killer of children in America.
  • Brain tumors are the leading cause of cancer-related death in children.
  • DIPG is the leading cause of death from brain tumors in children.

DIPG

DIPG is a brain tumor found in the Pons of the brain stem. Children are typically diagnosed between the ages of 5-7 with around 300-350 new cases per year in the United States. The median survival rate is 9 months from diagnosis, only 10% of patients survive 2 years from diagnosis. Long term survivors total less than 1%.

What makes DIPG so difficult to treat is not only its location (a very small area of the brain stem responsible for many critical bodily functions including breathing, swallowing, respiration, equilibrium and eye movement) but also the fact that it is “diffuse” (as opposed to looking like a solid mass or ball, it spreads out and mixes with healthy cells, it is sometimes described as looking “marbled”).

One of our doctors called it “the worst kind of tumor in the worst possible place.” The only standard of care to treat DIPG is radiation. Radiation is used to shrink the tumor giving temporary relief of symptoms but after a period of time the tumor typically grows back. As it grows, it cuts off those critical bodily functions until the child can no longer swallow or breathe and eventually succumbs. You cannot surgically remove DIPG and until very recently it was considered dangerous to even biopsy. This has resulted in very little DIPG tissue being available for researchers to study.

Perspective

As a parent of a child with DIPG it’s hard to describe the bewilderment and anger you feel when you are told the standard of care for DIPG has not changed in over 40 years. When you combine a lack of tissue to study with a severe lack of funding for childhood cancer, you end up with no progress.

Approximately 4% of the taxpayer-funded National Cancer Institute’s (NCI) annual budget is directed toward pediatric cancer. Not 4% for DIPG, not 4% for pediatric brain tumors… 4% for ALL of childhood cancer! Drug development is a huge issue for pediatric cancer. Drugs are developed almost exclusively for adult cancers and then simply “taken down” to treat pediatric cancers. Our children deserve better than this.

Vision

DIPG presents a great challenge. It is an extremely difficult and complex disease. We believe a cure will come from talented, passionate people working collaboratively. It will come from “Thinking outside the Box” and taking some risks. It will come from small breakthroughs happening in many different areas of medicine. The ChadTough Foundation is committed to funding this work.

So visit The ChadTough Foundation's page on Charitocracy to vote for, like, or discuss this cause! And watch this video about ChadTough's namesake, and the organization's efforts to rid the world of DIPG:

Thirteen is the Luckiest Number

Twelve

Twelve is the new Thirteen

I have ended the tyranny. Since Charitocracy day one, September 1, 2016, there has been an automatic 8.3% "tax" or "tip" to cover Charitocracy's overhead. A 13th month of contribution, essentially. We've used those funds to cover credit card fees, nationwide solicitation registration, web site hosting, software licenses, insurance, advertising, postage, inkjet ink, etc. But those days of mandatory tipping are over! $12 is the new minimum donation, with 100% going to winning charities.

Why now, Benj? Why ever?

I've been trying to put myself into the shoes of strangers. [Not literally, because if you're familiar with my feet, you know they probably wouldn't fit.] These strangers hear about Charitocracy from a friend, or see an ad on Facebook, or see me rocking a Charitocracy sweat jacket, running shirt, or coffee mug. They visit our web site, and then NOTHING happens.

One of my theories is this: they see a $13 donation where $12 goes to 12 charities. They think: scam alert! Charitocracy is skimming a buck off each $13 donor, and probably using it to charter flights to the Caribbean.

Not a bad theory. 59 cents of that $1 goes straight to credit card fees, but the remaining 41 cents would add up fast. Almost fast enough to cover our other expenses it turns out. But luckily we have donors whose employers match, or even double-match, their donations. So we've found ourselves plenty of breathing room for paying the bills while sending 100% of web site donations (and Facebook donations) into the monthly award pots for the winning charities. Still no Caribbean vacations, so clearly we have some kinks yet to sort out.

We appreciate each and every mandatoryincluded tip we've received from our early adopters during our 1st two years. You've paid for our setup costs to get up and running, and we're ever grateful. But from now on, these tips are entirely optional! You can go to My Account > Donation Change to switch to a non-tipping annual donation at any time. And new signups will not have this tip selected by default. It's an opt-in for all new donations. Maybe everyone will still choose to donate a "baker's dozen" 13 months worth every year, but this could be one less red flag for new donors who don't know us personally like many of you do.

In Other News

  • We had a larger than usual monthly pot of $1753 for September winner Youth Pride Inc! That's thanks to $2 matches per new social media Like/Follow, as well as matches for each new/upgraded donation. Well done!
  • We're continuing this promotion, so keep on inviting friends to join us or at least like our various social media accounts! Potential $8 in the October pot for follows: $2 each for Facebook, Twitter, Instagram, and LinkedIn. And then if one joins at the $12/year level, that's an additional $24 we'll match!
  • Despite the busy month, huge gain in likes (over 800 now on Facebook), and big pot, we had fewer voters in September than usual. Combine that with a swing of only 2.5 votes between 3rd place and 1st, your vote would certainly have an impact in selecting the winner. Get out the vote!
  • Just a few more hours to sweeten the pot for Youth Pride Inc. or to nominate a new cause for October. Looking forward to another great month!

I mean, really it's your choice.  But $13?  Still the best donation.

Congrats to September winner, Youth Pride Inc.!

Charitocracy's 25th check: to Youth Pride Inc. for $1753

Awesome birthday month, Charitocracy!

We attracted over 200 new social media followers in September. That channeled $414 extra into September's pot! We also had 6 new and upgraded annual donations. Those spread an additional $408 across the next year's worth of pots! (That's $34 per monthly pot!) Keep those likes and sign ups coming, and we'll keep the matching funds flowing! Next stop: 900 likes? Please go spam your friends now.

September 2018 winner: Youth Pride Inc.

Last night we voted in Charitocracy's 25th monthly winner. Congratulations to Youth Pride Inc., and to donor melissa745 for nominating it! YPI offers a safe space for LGBTQQ young people.

You have a week to further sweeten the pot with a special one-time donation of any amount, which we'll add straight to the check we write to YPI next week.

YPI started as a support group of the YWCA of Greater Rhode Island in December of 1992. In the middle of a snowstorm, four youth and an adult facilitator held their first meeting at Brown University’s Sarah Doyle Women’s Center. They shared their experiences, built community and named themselves, “The Way Out.” This small weekly group grew quickly soon overtaking the Women Center’s living room, with dozens of young people sitting on laps, tables and every part of the floor. In order to meet the needs of this rapidly growing group, “The Way Out” became Youth Pride, Inc, (YPI) and received its own tax-exempt status as a not-for-profit organization in 1994.

Our Mission

Youth Pride, Inc. is dedicated to meeting the unique needs of youth and young adults impacted by sexual orientation and gender identity/expression while working to end the homophobic and transphobic environments in which they live, work and play.

Our Statement of Values

  • LEADERSHIP: YPI is committed to creating the leaders of today. Youth voices drive our process, and we seek to develop the leadership skills necessary both within the organization and outside.
  • AFFIRMATION: YPI believes all youth must be affirmed for who they are and how they express themselves. We are committed to making that a reality in all of the environments in which young people live.
  • COMMUNITY: YPI believes building strong connections is essential to youth success and empowerment. We strive to create a caring, respectful and diverse community of young people and adults.

Check out this video from YPI, and feel good about your part in our collective $1753+ grant to help with their work!

Have a great October and log into Charitocracy to update your votes or nominate a new cause!

Spotlight on Hydrocephalus Association

Hydrocephalus Association #NOMOREBS

Next in our series of posts about Charitocracy nominees, we have Hydrocephalus Association, nominated by donor magresto. They are working to cure hydrocephalus, an abnormal accumulation of cerebrospinal fluid within cavities of the brain.

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

Hydrocephalus Association

Community. Clarity. Cure.

Seeking an end to hydrocephalus.

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain. Hydrocephalus affects over 1 million people in the U.S. alone. Approximately 1-2 babies for every 1000 births are born with hydrocephalus, but anyone can get hydrocephalus at any time through a brain injury or infection, among other reasons, or as part of the aging process.

In our effort to find a cure, HA pursues a three-pronged strategy.

COMMUNITY

Hydrocephalus means a lifetime of uncertainty for the families and individuals who are confronted with a diagnosis or who are affected by the condition. Naturally, they want to learn more, to understand what the condition entails, what treatments are available, and they want to know they’re not doing this on their own. We understand this, because many of us have stood in those same shoes. To help, HA gathers together valuable resources and connects individuals to larger communities that can provide support and understanding. By providing an online library and common space for those dealing with hydrocephalus, HA works to reduce uncertainty, advance the overall hydrocephalus community, and provide as much insight as possible into what remains an often challenging and bewildering condition.

CLARITY

Despite its broad prevalence, hydrocephalus remains a misunderstood and often hidden condition, and the general population largely remains unaware of the breadth and depth of the impact of hydrocephalus. This lack of clarity complicates diagnosis, and not surprisingly, it also results in limited funding. For example, while hydrocephalus is 30x more common that Cystic Fibrosis, it receives only 1/13th of the federal research money.

HA works to educate national and state policymakers, the medical community, and the general population about the nature and extent of hydrocephalus, and to focus attention on the condition and the legislation/attention needed for individuals to overcome challenges. Our Medical Advisory Board contains leading neurosurgeons, neurologists and other medical professionals and scientists to ensure that we are providing the most current and reliable information. We work to help others see the condition for what it is, so that it can receive the consideration it deserves.

CURE

Today, no cure for hydrocephalus exists, and the primary treatment – the insertion of a shunt into the brain – was developed fifty years ago and suffers from one of the highest failure rates of any surgical treatment. By focusing attention and research monies, HA works toward the ultimate end: a final cure to hydrocephalus.

Little is known about the causes of hydrocephalus, but recent research offers hope that a cure is indeed possible. Already we are seeing improved diagnostic techniques. New valve designs are improving the efficacy of the shunts used to treat patients. New treatment options have opened up the possibility of a life without a shunt for some individuals. Studies in biomarkers and genetics are providing promising insights into how we might prevent the condition from occurring. This is the power that research has, and every dollar matters. The more research we can fund now, the better the scientific foundation upon which future research will build. HA supports a Strategic Research Initiative that focuses on work that will truly advance our understanding of the condition, and with that, discover its causes, improve its treatment, and help us see an end to hydrocephalus.

So visit Hydrocephalus Association's page on Charitocracy to vote for, like, or discuss this cause! And watch this video about HA's efforts to cure Posthemorrhagic Hydrocephalus:

Spotlight on Preston’s March For Energy

Preston's March For Energy

Next in our series of posts about Charitocracy nominees, we have Preston's March For Energy, nominated by donor ColleenOBX. They provide access to adaptive bicycles for children with special needs.

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

Preston's March For Energy

Preston is a young man with Mitochondrial Disease, which leaves him with low muscle tone and developmental delays. He tires easily and has balance issues but everyday he wakes up smiling and determined to keep up with this friends and especially his big brother!

During the summer of 2011 Preston was blessed to have an adaptive bike donated to him through a fundraiser that was developed by a family friend. The Buenaga family was amazed by this overwhelming support, and they are determined to “pay it forward” by raising money (each bike costs between $1400 and $2500) for more children to realize their dream of riding their own bike.

Preston’s March for Energy was created with this goal in mind. With the overwhelming need for adaptive recreational equipment for children with disabilities and the concern for childhood obesity Preston’s March For Energy’s mission is to provide adaptive bikes to children with special needs.

So visit PMFE's page on Charitocracy to vote for, like, or discuss this cause! And check out this thank you video celebrating their 300th donated bike a few months ago:

Spotlight on Cerebral Palsy Alliance Research Foundation

Cerebral Palsy Alliance Research Foundation

Next in our series of posts about Charitocracy nominees, we have Cerebral Palsy Alliance Research Foundation, nominated by donors katnadam0616. CPARF funds cerebral palsy research.

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

Cerebral Palsy Alliance Research Foundation

What is Cerebral Palsy?

Cerebral palsy (CP) is a physical disability that affects movement and posture. 1 in 3 children with cerebral palsy cannot walk and 1 in 5 cannot talk.

Our Story

Cerebral Palsy Alliance Research Foundation was proudly established in the United States in 2015 to fund the world’s best research to treat, prevent and find a cure for cerebral palsy.

Purpose and Vision

Our vision is a future without cerebral palsy. Our purpose is to support the world’s best and brightest researchers to find a prevention and cure for cerebral palsy.

So visit CPARF's page on Charitocracy to vote for, like, or discuss this cause! And check out this short video about their latest fundraiser:

Spotlight on AFSP

American Foundation for Suicide Prevention (AFSP)

Next in our series of posts about Charitocracy nominees, we have American Foundation for Suicide Prevention, nominated by donor Stephanie, who recently lost a close family member to suicide. You and your family are in our thoughts, Stephanie. ❤️

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

American Foundation for Suicide Prevention (AFSP)

Mission: Save Lives and Bring Hope to Those Affected by Suicide

Established in 1987, the American Foundation for Suicide Prevention (AFSP) is a voluntary health organization that gives those affected by suicide a nationwide community empowered by research, education and advocacy to take action against this leading cause of death.

AFSP is dedicated to saving lives and bringing hope to those affected by suicide. AFSP creates a culture that’s smart about mental health by engaging in the following core strategies:

  • Funding scientific research
  • Educating the public about mental health and suicide prevention
  • Advocating for public policies in mental health and suicide prevention
  • Supporting survivors of suicide loss and those affected by suicide in our mission

Led by CEO Robert Gebbia and headquartered in New York, and with a public policy office in Washington, D.C., AFSP has local chapters in all 50 states with programs and events nationwide. AFSP celebrates 30 years of service to the suicide prevention movement. Learn more about AFSP in its latest Annual Report, and join the conversation on suicide prevention by following AFSP on Facebook, Twitter, Instagram, and YouTube.

So visit AFSP's page on Charitocracy to vote for, like, or discuss this cause! And check out their short video to learn how you can fight suicide:

Spotlight on Malala Fund

Malala Fund

Next in our series of posts about Charitocracy nominees, we have Malala Fund, nominated by donor SuZQ. They break down barriers preventing more than 130 million girls around the world from going to school.

A few words on Charitocracy

Firstly, for newcomers: here's how it works. Donors pool their monthly contributions, as little as $1. The cause with the most votes each month wins the pot. No matter how much or how little you contribute, each donor at Charitocracy gets one vote. This is where charity meets democracy. So please share this post and ask your friends to join us and vote! That's how we spread the word and, as a result, grow the monthly pot. The bigger the pot, the bigger our positive impact on the world!

Malala Fund

Malala Fund is working for a world where every girl can learn and lead.

With more than 130 million girls out of school today, here’s how we’re breaking down barriers that hold girls back.

Investing in local education activists

Through our Gulmakai Network, we invest in local educators and advocates — the people who best understand girls in their communities — in regions where the most girls are missing out on secondary school.

Advocating to hold leaders accountable

We advocate — at local, national and international levels — for resources and policy changes needed to give all girls a secondary education. The girls we serve have high goals for themselves — and we have high expectations for leaders who can help them.

Amplifying girls’ voices

We believe girls should speak for themselves and tell leaders what they need to learn and achieve their potential. We amplify girls’ voices and share their stories through Assembly, our digital publication and newsletter.

So visit Malala Fund's page on Charitocracy to vote for, like, or discuss this cause! And check out their short video explaining what they do and why they do it:

If you have more time, watch Malala Yousafzai's Nobel Prize acceptance speech:

And finally, if you have even more time, spend an hour with Malala and Dave Letterman on his Netflix show.

Hello Terrible Twos and Huge Matching Funds

Every Like and new donation gets matching funds!

Okay, so you've heard we just turned two, right? Key word: "We." This is us. Together we made it this far. Two years, 24 monthly winners later, we've distributed nearly $30,000! WE.

Growth report: 😭

I don't want to sugarcoat the growth situation. We gained some and lost some over the past 12 months, and ended up right where we were last September. Our generous donors opened their pockets wider, in some cases dramatically and overwhelmingly wider. But the donor count is just above 200 like it was on our first anniversary. I have yet to crack the code on how to turn advertising $ into new donors. Not for lack of trying!

We received significant major donations this year, along with employer matches, which the donors earmarked for attracting new donors. Experimental advertising has come out of these funds, and we'll continue learning the art and improving those efforts. But we saw some success last year incentivizing new signups and social media follows by releasing matching funds into the pot. So we'll try that again this year, using this same new donor attraction earmarked money. Without further ado...

Announcing return of $1 Likes

We just crossed the 600 Like mark yesterday. 615 at the time we went to press with this blog post. Each and every cumulative new like will get a dollar of matching funds tossed in the current monthly pot. So if you invite 100 friends to Like Charitocracy's Facebook page (instructions in this blog post), and 30 of them actually listen to you for once and do it, that's $30 extra for September's winner! Nice and simple. Additional Twitter or Instagram followers get the same treatment. We're at 60 and 116 followers on those platforms, respectively. This can add up really quickly, and we have plenty of matching funds to back it up. The goal is to get more folks tuned into Charitocracy so that we can over time convince some of them to pony up $13 and join us for real!

Also return of $1:$1 matching funds for donation increases

If any one you were on the fence about increasing your annual donation (or to switch to one of our new monthly plans), let me help pull you down and drag you to your wallet. If you decide, for example, to bump up to $5 per month, we'll throw an extra $5 per month, for a whole year, into the pot. Nudge, nudge. That fence is a lonely place. Added bonus, this doubling will be counted in your Giving Tree as a matching donation, as if it came from your employer. (If your employer also matches it, that of course gets counted, too.) You may not be too familiar with your Giving Tree, but read on to the Leaderboard section...

New this year: $2:$1 matches for new donors!

Every new donor's initial donation, whether $13 or $390, will get tripled out of the matching funds. I have a feeling incentivizing new donors in this way will cost less than acquiring them through advertising. And this money will go to winning charities instead of social media companies, another big win in my book! So be aware of this incentive when talking to friends about Charitocracy or inviting them over email.

Leaderboard coming...

All of my work trying to crack the social media advertising nut has deprived me of my true love: coding up new features and ways to streamline and push the envelope with Charitocracy. But one of these months I'll crank out the leaderboard where we can recognize extraordinary efforts by donors to grow Charitocracy. Not just in terms of their own donations, since many of us prefer to keep those private. But by recognizing donors' Giving Tree growth, which includes new donors they invite (or gift) into Charitocracy, we could bring a healthy competitive aspect to Charitocracy.

I'm thinking categories like these:

  • Biggest Giving Tree
  • Fastest Growing Giving Tree
  • Most New Donor Recruits
  • Most Generous Individual Donor (opt-in)

Your ideas are always welcomed, and may I say even critical to our success! So please reply to this blog post, to our social media accounts, or directly on our site.

And your Like gets a dollar...  And your Like gets a dollar...

Congrats to August winner, Leukemia & Lymphoma Society

Charitocracy's 24th check: to Leukemia & Lymphoma Society for $1391

Happy 2nd birthday, Charitocracy!

Today marks the 2nd anniversary of Charitocracy going online. Thanks to everyone who's been with us since Day 0. Also a warm welcome and thank you, even a big hug if you're into that, to everyone who's joined us along the way. And if you've yet to sign up, there is absolutely no better day than today. Life is short, and $13 goes a long way!

A great way to help celebrate would be to invite your friends to like our various social media pages. We've been stuck in the mid-500s with our Facebook followers for a while, so here's a birthday wish: get all your Facebook friends to follow us, too. Instructions are here. Maybe some of them will like what they see and get on board? If you're more into Instagram or Twitter, some reposts or retweets couldn't hurt!

August 2018 winner: Leukemia & Lymphoma Society

Last night we voted in Charitocracy's 24th monthly winner. Congratulations to Leukemia & Lymphoma Society! They're investing billions in curing leukemia, lymphoma, Hodgkin's Disease, and myeloma. Also congrats to donor amrizzo01, who nominated LLS back in May in honor of friends affected by blood cancers.

You have a week to further sweeten the pot with a special one-time donation of any amount, which we'll add straight to the check we write to LLS next week.

Cancer is a heck of an opponent.

It's a bully. But we aren't afraid of a fight.
It's elusive. But our focus never fades.
It's deadly. But we are known cancer killers.

Since 1949, we've pioneered groundbreaking research that leads us to believe we will find the cures for cancer in our blood.

We were born to defeat this opponent.
We are The Leukemia & Lymphoma Society.
Beating cancer is in our blood.

Check out this video from LLS, and feel good about your part in our collective $1391+ grant to help with their work!

Have a great September and log into Charitocracy to update your votes or nominate a new cause!