This is how we arrived at Hope Heals Camp -- my daughter surveying the welcome party with a satisfied smile -- we were BACK! Getting to go as campers two years in a row is a rare blessing. (I heard camp had a waitlist of 1,000 people!)  After I returned home and began processing it, this voxology podcast reminded me how truly upside-down Hope Heals Camp is. Hundreds of volunteers pay a lot of money for the privilege of being with families like mine. Instead of fancy vacations, these folks brave the heat and humidity of Alabama, along with mini-scorpions(!) and bunkbeds, to come to a place where "GoodHard" is lived out. "Put that in your pipe and smoke it," as my friend Marilyn likes to say. In nearly all realms of life, families experiencing disability have to advocate, ask, and often plead for support and services. In many ways, our families are at the bottom of the social strata. At camp, we get to be pampered and "loved on," welcomed and applauded; our...

Sacred spaces transcend place. There's something intangibly otherworldly that defines a sacred space. So it was July 1st at a chapel in Northern Alabama. I'd heard tell of this sacred space made so by its physical beauty but, moreover, by what took place there. This compelled me to experience firsthand the Hope Heals Camp Talent Show. "Talent show" evokes memories of school auditoriums filled with earnest youngsters demonstrating their talents. This was something else altogether. To be sure, there was a stage and there were earnest youngsters and there was talent. Picture, however, a chapel overflowing with 500 people ready to cheer on everyone who graced the stage. My daughter's gymnastics routine met with the most full-bodied cheer I've ever witnessed. Grown men were jumping up and down, silently pumping their fists in the air since Miriam requested a silent cheer. Plenty of participants requested loud cheers and those raised the roof. Two acts in particular...

"There was a time when I thought it was a nuisance to be confronted with a problem. I tried to get rid of it. I tried to get somebody else to solve it for me. But that was a long time ago . . . Problems are learning and growing experiences. A life without problems would be a barren existence, without opportunity for spiritual growth."  (59-60) Peace Pilgrim kept track of the first 25,000 miles she walked, back and forth across North America, and then she stopped counting. After a 15 year preparation period, she walked for 28 years! As she explained it, "there's a great deal of difference between being willing  to give your life and actually giving  your life, and for me fifteen years of preparation and inner seeking lay between." (Peace Pilgrim, 8)  She gave her life for the cause of peace at the individual, community, national, and international levels. She traveled light, never accepted money, and only accepted food and shelter if freely offered. Her writings ...

Through a combination of storytelling and journaling prompts,  Space to Process  is here to ensure that you are not alone as you parent a child with a disability. This book feels like that friend who gets it – the self-doubt, the situations you just couldn’t make up, and the poignant experiences that keep you going. It’s a thought provoking tool for navigating the complex journey of raising your child. Sarah Spear offers a sincere and compassionate tone that motivates you to thoughtfully contemplate your story. Whether your child has a disability, has a rare disease, or is neurodivergent,  Space to Process  will resonate with you. The honestly shared personal experiences reassure you that the author knows what you’re going through. After each entry, you are prompted to record your own story on the lined pages that follow. Writing allows you to reframe your experiences, gain new perspective, and grow. Space to Process  will guide you through 30 reflections on the...

  Let me introduce you to Etty Hillesum, in case you haven't made her acquaintance. I happened upon her writing a couple years ago and just finished reading  An Interrupted Life , The Diaries of Etty Hillesum. This image of Etty captures some of her bohemian, intense personality. Hers was an examined life, scrutinized in close detail over the course of the two years that she wrote. Her reflections trace her evolution and, should you ever pick up the book, I encourage you to persevere through her early romantic ramblings in order to fully appreciate the person who emerges. Etty wrote during her final years in Amsterdam (1941-1943), before electing to accompany her parents and brother to a transit camp in the Netherlands. She was forcibly deported to Auschwitz where she died. What resonated most deeply with me were the inner struggles Etty faced head-on. A couple quotes give you a sense of this capacious woman: "Sometimes I had the certain if rather undefined feeling that I woul...

This winter, Miriam and I have gotten into the habit of watching Friday night movies while John and Will are at basketball practice. Last week, we watched  BLINK . It tells the story of the Pelletier family's around the world trip. When three of their four children are diagnosed with a rare disease that will lead to severe visual impairment, the family decides to fill the kids' visual memory banks while they still can.  What ensues is a beautiful, honest portrayal of that trip.   The kids create a bucket list that leads them to Asia, Africa, and South America. To fulfill their goal to see a sunrise on a mountain, they trek to Poon Hill near the Annapurna Sanctuary. I had flashbacks of living in Nepal and trekking to the same spot, recalling similar friendly dogs along the trail, altitude adjustment, and the exquisite views.  The film doesn't shy away from tough conversations. Mom and daughter reflect on whether the daughter will still sense the vastness of a desert o...

Since sunsetting Empowered Together, I've been working on what comes next. Come behind the scenes with me to see what's cooking. As Empowered Together's marketplace failed to gain traction, I wondered if I had moved too far away from my personal experience as a caregiver. Whatever came next, I wanted to be operating from a place of confidence around needs and possible supports. Going all the way back to June, I heard about a friend who was working on a journal for folks in his community. I teared up as Justus read his poetry about food insecurity and shared how journaling could support people in the place he calls home. He and I daydreamed together about building ecosystems locally, he in Chicago and me in Connecticut. While grinding away on the marketplace, I slowed down to pay attention to what was happening around me. Caregivers kept reaching out, wanting support for themselves and their kids. I facilitated a couple sessions for moms at the library and another session at...

This past year, Empowered Together piloted its two-sided online marketplace in New Haven. The pilot tested the hypothesis that customers living with disabilities and businesses desiring to attract these customers would gain value from the marketplace. The pilot also tested the hypothesis that the value gained by businesses would translate into revenue for Empowered Together. In short, the pilot disproved both hypotheses.  This means Empowered Together has come to an end. Last December I told my husband, John, that 2024 was going to be the make it or break it year for Empowered Together. At that point, the company had just enough cash to run the New Haven pilot. If that had been successful, I would've used the results to go out and fundraise in order to scale the marketplace to new business verticals and new locations. In the end, the product-market fit that had eluded Empowered Together proved to be its demise. Reflecting on this 1,264 day journey brings these insights, offered wi...

The bullhorn sounded and he was off, swimming his heart out, across a 50m stretch of lake as deep as his arm is long. My youngest, William, competed in his third year of the  Race4Chase  triathlon in August. When we first applied, I reflected on how I hoped this triathlon camp would allow Will to do something that was entirely his. It would be an opportunity to spread his wings apart from his sister's influence. For siblings of kids living with disabilities, this kind of autonomy is life giving. Back at the lakeside, I was watching Will from a distance and ringing a cowbell like no ones business. Will ran up from the waterfront and we cheered him on. He transitioned to the bike portion and we cheered him on. When he came into view at the end of the bike and transitioned to the run, the final segment of the race, we cheered him on. All the while, that cowbell was clanging. When Will sprinted across the finish line, there was no stopping him (or the cowbell). Thinking about...

I watched the movie  Ezra  with a mom friend Sunday. In short, I commend it to you.  According to the trailer note, the film, "follows a stand-up comedian living with his father, while struggling to co-parent his autistic son Ezra with his ex-wife. When forced to confront difficult decisions about their son’s future, Max and Ezra embark on a cross-country road trip that has a transcendent impact on both their lives." If you're curious what I thought, read on and beware of spoilers. 😬 And here are the cast of characters for context: Ezra: autistic son Jenna: mom Max: dad Stan: grandpa and Max's dad This movie tackles a LOT in 100 minutes. . . Hyperbole: To tee it up properly, understand that the events in this film are over the top. If you go in expecting this kind of exaggeration, I think you'll be less flummoxed at how unbelievable it all is and can more readily see yourself and people you know in the characters. The hyperbole serves to get us thinking about the...

Today's Rare Disease Day. There's sometimes a particular weightiness to life with a rare disease. All the appointments, emergencies, traumas, doctors, therapists, medicines, opinions, schedules and upset schedules. My touchpoint is being mom to my precious girl with Wiedemann-Steiner Syndrome  (WSS). You'd have to spend a day or week shadowing me to know what it's really like. Doesn't that sound alienating? As though you couldn't possibly imagine if you're not living it? Well, maybe. But think about a time of immense grief you've lived through, or a time when your world seemed to be falling apart around you and it felt like everyone else was completely unaffected. I suppose it's a bit like that. You might have thought that those around you couldn't possibly know how that experience felt to you. A couple weeks ago, I started keeping a list of all the extraordinary things that happened in my life due to my daughter's rare disease. I learned a c...

We kicked off our New Haven pilot with a press release January 29th. That garnered a bit of media attention  and interest from users across the country when Disability Scoop picked up the story. I'm trying to stay laser focused on the goals of this pilot: 1) determining the critical mass of users and businesses necessary for the marketplace to be of interest to these two sides of the marketplace 2) refining a scalable business model (in plain speak, figure out how we'll make money) Even though I'm focused on New Haven, it's gratifying and validating to hear from users across the country that they want this resource in their town, too.  The online marketplace  is open to users everywhere to recommend businesses anywhere. While we're only doing accessibility reviews in New Haven right now, I'm dreaming up how to make our accessibility reviews scalable. That'll help us reach more geographies sooner.

I've been "keeping advent" this season in the way one might keep the Sabbath or Lent -- intentionally under scheduling, decluttering, opting out of historic holiday obligations, fasting -- and I think it's having an effect. All this advent keeping makes me long for the feasting of Christmas. I eagerly yearn for Monday when all heaven breaks loose to celebrate Christ's advent on earth. Advent keeping has also allowed me to be still and recognize patterns that have played out over the last year. 2023 has been tough. I wonder who else feels this; I know I'm not alone in feeling the weight of an unpredictable world. My very body tells the tale of stress and years of inattention as I work through intense lower back pain. Vocationally I've strained toward product-market fit with Empowered Together's marketplace. I'm left longing for a co-laborer in this effort. While I remain deeply grateful for my family, I feel the pressures of parenting a child with a...

This fall, I ran for election to my local Board of Education. All four Democratic incumbents on our board were up for election. Our campaign began in August and continued through November 7th. By the numbers, I made 217 calls wrote 150 postcards knocked on 125 doors attended 8 community events wrote 4 Letters to the Editor won by 3 votes That last figure is what blew me away -- I will remain on our Board of Education because four people decided to get their ballots and vote. I know these folks: a friend's mom who's critically ill, wasn't planning to vote, but got fired up about issues and decided to make her (& her husband's) wishes known firefighters whom my friend's husband texted, telling them to vote for me  a guy on my husband's basketball league who said it was hard to vote for a Democrat but he did it While winning by a wide margin would've been nice, winning by a slim margin leaves me with important insights: Every vote matters and counts.  I was...

Iteration is emblematic of startups. For example: From last year's pilot , we learned that parents and adults with disabilities were looking for recommended resources.  We built the Empowered Together app and tried crowd-sourcing those recommendations.  In our New Haven pilot, we're bringing database building in-house by listing accessible food, arts, and recreational businesses in greater New Haven.  Thankfully, we have thought partners in this endeavor at the City of New Haven and at community disability orgs. We are working with a Quinnipiac student and awaiting word on additional grant funding. We're taking the right next step in changing the social system to be accessible and inclusive of People with Disabilities.

It's official, you can visit app.empoweredtogether.us  to see what we've been building! It's been a long journey to get here though this is really just the beginning. Yesterday, I reflected on why I'm doing this ( watch here ). I want to dive a bit deeper around the concept of creating the future I want to live in with my kids. I'm building a marketplace to connect families affected by disability with recommended businesses. I hypothesize that this will increase the rate of excellent customer experiences for People with Disabilities (PwD) -- 80% of their customer experiences are currently FAILURES! I also hypothesize that businesses will see the value in welcome PwD and society will slowly become more inclusive and accessible. Big dreams, I know, but that's the future I'm creating. On the personal side, creating that future would be meaningless to me if my kids and I didn't get to enjoy it together. That means it's equally important for me to engage ...

Hunkering down and revisiting user data consumed much of my last hundred-odd days, resulting in a Minimum Viable Product (MVP). Simply built using Softr and Airtable (with tons of gratitude for  INVANTI 's support), I'm testing the willingness of Disability Self-advocates and Caregivers to find and write reviews of providers they recommend. Of the 200+ pain points expressed by Empowered Together's community, 88% can be addressed by the online marketplace simulated in our MVP. Users get to recommend respite providers, social activities, and therapists they love. We're testing a shift from Word of Mouth recommendations to tech-enabled referrals and lead gen, leveraging the collective voice and purchasing power of the disability community. This progress energizes me as a founder. This could be the key to unlock support for families affected by disability. My narrative for a startup bootcamp's application summarizes it best: As Empowered Together’s founder, Sarah has a ...

First some updates on recent posts: Winter break offered a welcome pause in work activity. The kids and I made lists of activities we planned to mentally put aside during the break. I wrote down agonizing over product-market fit; they wrote down fighting with their sibling. Their favorite part was burning up their lists afterwards to symbolically set aside what we wrote down. 😁 Empowered Together's enterprise pilot with LOGAN concluded and we left the door open for future conversation. The pilot showed both LOGAN and Empowered Together that engaging parents in community is difficult, that immediate kids' needs drive parents' behavior, and that parents are willing to ask for help to meet those needs.  With those lessons in mind, I piloted a December Accelerator with parents to test whether an accelerator model helps users move forward on their parenting journeys. I was also curious if participating as a cohort would impact their momentum. The emotional support offered betwe...

It's that time of year when my back and/or shoulder acts up, when it's hard to sleep, when multiple to-do lists (professional, personal, kids' schools, family gatherings) run on repeat through my mind. A fellow Founder and Mom remarked that she's the one responsible for creating the magic of year-end in her household, all the while building her startup. I can relate. In response, I'm trying out an intentional respite idea here. How can I close "the office" during the last week of the year? What do I need to put into place to support stepping away for a week? This was so much easier when I worked for someone else and merely had to find coverage and fill folks in on what to do in my absence. There are a couple reasons it's hard for me to step away: 1. I like my work. It gives me purpose and immediate feedback in ways that being present in other areas of my life doesn't. Don't get me wrong -- there's immense purpose in other areas of my life s...

Empowered Together's enterprise pilot is entering its final stages and here's what we've learned: About 20% of my individual touch points have resulted in meeting user's needs engagement of users asynchronously and with me is high engagement of users synchronously and with each other is low So what? Needs directly related to their children brings parents to the table. Community with peers could be a future benefit but it's not what's driving user behavior. For the next month, I'm engaging in customer discovery conversations to better define the problem. I'm endeavoring to answer this question: "What is the job a parent hires Empowered Together to do?" The answer to that question will drive persona creation, then testing the stickiness of the solution with a broader audience, and another pilot. Over the past month, I've wrestled with this process because it feels like returning to square one. The difference, though, is that I'm equipped ...