Avery’s Hope Raising Funds for Grandson’s Extremely Rare Disease

I recently had a very interesting conversation with Caryl Harris, the Founder and Executive Director of Avery’s Hope.

Avery's Hope is a charitable organization created about 10 years ago by Caryl and Eric Harris to provide financial support and advocacy for families impacted by rare gastrointestinal diseases.

Learn more about Avery's Hope, their upcoming fundraiser, and why Avery is a "spotted zebra" here in our conversation:

When he was three months old, their grandson, Avery Harris, was diagnosed with Microvillus Inclusion Disease. He is one of 100 people in the world diagnosed with this disease. During his first three years, Avery spent a good amount of his time in hospitals. Caryl and Eric watched as their son, daughter-in-law, and other families navigated through the healthcare and insurance systems and managed the financial burden of insurance-denied expenses. This was their call to action to help patient families. 

Their fundraising dollars support several hospitals and rare organizations nationwide. These funds are then distributed to patient families as needed.

Children's Hospital of Philadelphia (CHOP) HOPE fund for GI families receives the bulk of the donations. They have provided about $100,000 over the past ten years.

Also benefitting from Avery’s Hope are St. Jude's Research Hospital Pre-Cancer Disposition Center, Children's Hospital of Pittsburgh Acacia/Puleo Small Bowel/Liver Transplant Patient Assistance, Texas and Boston Children's Hospital Patient Assistants, and National Organization of Rare Disorders (NORD) Travel and Lodging fund for rare GI patients.

Related: Join Joel Katz and Support the American Foundation for Suicide Prevention

Through their BrAvery Awards, they provide funds directly to patient families. These funds are used to cover insurance-denied expenses as well as medical supplies, diapers, formula, rent, utilities, and other expenses. Most of the patient families are underemployed or unemployed as they focus on caring for their children.

Avery’s Hope is a 100% volunteer organization and 100% of the money raised from their fundraising events goes to the patient families.

Their main fundraising event is a Caring for Rare Bicycle ride in Hunterdon and Bucks counties on Sunday, September 22. It’s a ride for everyone and all skill levels. There are rides on the D&R canal and there are three road courses of 31, 62, and 100 miles. All rides are fully supported with SAG wagons and rest stops. The ride starts and ends at the Federal Twist Vineyard in Stockton, Pennsylvania.

All registrants receive a meal and drink of their choice after the ride. There will also be live entertainment provided by Little Red Rooster Blues Band. Participants can also rent bikes from Unlimited Biking (pre-registration required). They have about 150 riders and volunteers signed up, are expecting 250 to 300, and can accommodate up to 400.

Avery’s Hope is so much more than a fundraising organization, they also advocate for the rare community. It’s linking patients to the proper care team and necessary resources or lobbying for legislation that’s inclusive, fair, and equitable for the rare community.

New Jersey Governor Phil Murphy and Pennsylvania Governor Josh Shapiro declared September 7^th Gastrointestinal Disease Awareness Day. On September 7^th Avery turns 10 years old!

More information can be accessed at Averys-Hope.org

The back-to-school shopping season is upon us, and teachers everywhere are digging into their own pockets to stock up on classroom essentials. According to the National Education Association, educators shell out an average of $500 to $750 annually on supplies their students need.

Many teachers say their districts don’t always provide everything needed to keep students engaged, comfortable, and ready to learn. A survey by the U.S. Department of Education reveals that 94 percent of teachers are spending their own money on classroom necessities. It’s not just teachers either. Support staff like bus drivers, front office personnel, classroom aides, and custodians are also using their own wages to buy supplies.

These purchases cover everything from paper, pencils, markers, and glue, to online learning program subscriptions, lab equipment, snacks for hungry kids, tissues, cleaning supplies, and even hand soap for the bathrooms.

Last year, CNN reported that most school supplies have jumped in price, sending the cost of writing tools and supplies such as crayons, pens, and pencils up nearly 19% year-over-year.

Jamesha Gilliam, a public high school English teacher in Marion County, Florida, keeps a locker in her class filled with pens, pencils, notebooks, glue sticks, and other stationery materials.

“I use my own money to keep it filled up during the year,” said Gilliam. But she was hit with sticker shock when she went to buy a bulk supply of unsharpened pencils. “I would get a 50-pack box for $10, and this year it’s closer to $25,” she shared with the outlet.

Parents have been noticing this as well with some sharing how the cost of back-to-school supplies has gotten out of hand.

TikTok user @cramer.crew, known as Christy, recently shared her annual back-to-school haul for two kids. Her list included the usual suspects like dry-erase markers, folders, notebooks, glue sticks, tissues, and paper towels. Most items were store brands, particularly Target's, which another local mom found to be the cheapest. Christy skipped big-ticket items like electronics and didn’t include backpacks or lunchboxes, which she bought separately. Despite reusing some items like her older child’s backpack and calculator, her total still came to $170.23.

“Absolutely insane. Insane!” she exclaimed.

Another parent, @addi_archers_mommy, known as Harlee, shared her frustration: “I just spent about $100 on my first grader’s school supplies,” she said. “And they wouldn’t even let me buy anything fun.”

She showed her haul, noting the specific name brands required. Although Harlee didn’t always stick to those brands, a teacher friend explained that these requests often come from experience, as investing in quality can save money long-term.

No one seems to blame teachers for the costs. In fact, Christy, in the comments of her video, expressed appreciation for teachers, telling one commenter, “Crazy how teachers are expected to provide it all.”

As the back-to-school season kicks off, some retailers are stepping up to ease the financial burden on teachers by offering discounts and special deals on classroom supplies. They’re rolling out special deals and discounts to help educators fill their classrooms without emptying their wallets. Ready to see which stores are making it easier for teachers to snag those must-have supplies? Take a look at the list below and find out who’s offering a helping hand this school year.

New members can get a $20 or $40 Costco Shop Card, an exclusive offer for teachers. Teachers also receive a 10% discount at most Dollar Tree locations by showing a valid school ID. At Michael’s, teachers save 15% on every purchase. Office Depot offers a 10% discount on in-store purchases for teachers. Staples provides a 20% discount on in-store purchases with an app coupon and teacher ID. Additionally, teachers can enjoy 20% off storewide at Target through Target Circle, available until Saturday, August 24.

Both teachers and students can access Adobe Pro, which includes Photoshop, Illustrator, Premiere Pro, and InDesign, for just $19.99 per month during the first year, and $34.99 per month thereafter. Additionally, teachers and their families can enjoy a 25% discount on AT&T wireless plans, starting at $27 per month for four lines. Instructors can save up to $25 per month on Verizon's Unlimited wireless plans. Canva offers free access to creating lesson plans, posters, and infographics through this link. Teachers get six months of Babbel lessons for $36, a 60 percent discount. Teachers also receive discounts on Google Workspace for Education, which includes Gmail, Drive, Docs, Meet, and more, as well as discounts on Chromebooks. Office 365 Education and Microsoft Teams are available for free, along with a 10% discount on Windows devices. The Apple Store for Education offers discounted items for K-12 teachers, including select Macbooks and iPad.

Books will always be essential for both students and teachers, and there are discounts available for educators looking to expand their collections. Teachers can enjoy up to 25% off on books, toys, and games by joining Barnes & Noble Educators. The Scholastic Teacher Store offers great items for 25% off and up to 50% off with other sales and deals. Scholastic also hosts book fairs and warehouse sales where teachers can purchase items at marked-down prices. Additionally, local bookstores often offer similar discounts for teachers, so it's worth checking out nearby options to find the best deals.