A Round for Rylee Recap

FRIDAY OCTOBER 5TH. It was raining all week, and supposed to rain the whole day.  Luckily our little angel had other plans.  We had been planning for this day for months now.  Eager for it to come, yet still heartbreaking that we weren’t able to have Rylee with us.  We knew when Rylee passed away we wanted everyone to remember …

Camp Hazelnut 2018 (Sister Hazel’s Lyrics for Life Foundation)

We spent this weekend at the 4th annual Camp Hazelnut at Camp Crystal Lake outside Gainesville, FL. The Camp Hazelnut goal is simple: create a playful, safe, uplifting experience for kids and families navigating the overwhelming challenges of a cancer diagnosis… a place to simply get away and come together. The band members from Sister Hazel organize the event through their …

Karaoke 5k (the recap)

I reached out to Beat Nb in April of this year. It’s an organization that I had been following here and there for some time while my son Nnamdi was alive. Nnamdi passed away on October 31st of last year after battling the disease for 18 months. He was two. By April of 2018, I was physically and emotionally exhausted …

A deeper look at the recent DFMO paper…

Neuroblastoma (NB) is the most common solid tumor found outside of the brain diagnosed in kids.  Two years of age is the average time when a child is diagnosed, and about half of these kids are diagnosed with high-risk (HRNB), which has a very poor prognosis.  And sadly, this is despite very intense treatment given to these toddlers to treat …

Maintenance DFMO Increases Survival in High Risk Neuroblastoma

Many of you have been seeing the headline about DFMO over the past week. I’m talking about: Maintenance DFMO Increases Survival in High Risk Neuroblastoma (full paper link here). More simply put, DFMO saves lives. The numbers don’t lie – neuroblastoma is a deadly form of childhood cancer. The grueling upfront treatment process can easily take a year and involve …

A Hole in One for Harlow – Evansville, WI

A Hole In One for Harlow, presented by our naming sponsor, Retirement Income Strategies, held its inaugural golf outing on September 8, 2018 at the Evansville Country Club in Evansville WI.  After a week of torrential downpours and concerns over continued rain on Saturday, the skies parted and the sun shone with a light breeze while twenty teams of golfers ranging from amateurs …

Patriots Present Patriots Difference Maker of the Week Award to Patrick Lacey from Braintree, Mass.

FOXBOROUGH, Mass. (Sept. 14, 2018) – Eight years ago, the Kraft family and Patriots Foundation introduced Celebrate Volunteerism, a season-long initiative focused on recognizing community volunteers and promoting the importance of giving back to the community through service. Throughout the 2018 season, the foundation will continue its Celebrate Volunteerism initiative by teaming with nonprofit organizations to educate fans about the …

Gold: An Evening to Beat Childhood Cancer (Tampa, 2018)

It was a beautiful and perfect evening. Presented by CrossCountry Mortgage, Inc, with incredible support from the Ryan Callahan Foundation, Papa Johns, and the 13 Ugly Men (among many others), Beat Nb’s Gold: An Evening to Beat Childhood Cancer raised over $265,000 on Sept 8 at Armature Works in Tampa. 350+ caring, passionate people came together to celebrate how we …

Running 200 miles for Lola

A couple weeks ago some of our friends and family came together to support neuroblastoma research and trials in the craziest way yet! Together we RAN 200 MILES! What an experience it was! Our team of 12 raised over $14,000 to fight for children with the neuroblastoma, the beast that took our precious Lola Mae from us two years ago. …