Hope for Chrissy and Amanda

Hope for Chrissy and Amanda We are 7 year old Amanda and forever 10 year old Chrissy. Amanda has received her gene therapy and we are excited to see what she will become!

This is to raise money for Chrissy and Amanda Grube, two little girls from Texas who live in Maryland who have a rare disorder known as Giant Axonal Neuropathy, or GAN. These precious children are among less than 25 known cases in the United States with this cruel disorder.

07/09/2017
It's World Rare Disease Day!Wear jeans! Read up on rare disease legislation and research!Donate to a charity that suppor...
02/28/2017

It's World Rare Disease Day!
Wear jeans! Read up on rare disease legislation and research!
Donate to a charity that supports rare disease research, treatment, and patients! May I recommend Hannah's Hope Fund?
www.hannahshopefund.org

02/22/2017

We got some good news this week:
Amanda is getting a wish granted from Make A Wish, and Chrissy is being honored by NORD with the Rare Impact Patient Award. Amanda will receive the award on her behalf.

One year ago today we lost Chrissy. She will live on in the hearts of those who were lucky enough to know her, or hear h...
02/13/2017

One year ago today we lost Chrissy. She will live on in the hearts of those who were lucky enough to know her, or hear her story of courage and love and kindness.

02/08/2017

Our friend Lottie passed away this morning. Chrissy is showing him how much fun it is to run on the streets of Heaven.
Fly sweet angel

Amanda is ready for the 100th day of school tomorrow. Chrissy would be ecstatic that we found a use for the Shopkin bags...
02/07/2017

Amanda is ready for the 100th day of school tomorrow.
Chrissy would be ecstatic that we found a use for the Shopkin bags!

Amanda the dancer
02/04/2017

Amanda the dancer

11/15/2016

Apologies for the lack of updates.
Since we lost Chrissy it has been hard.

On October 18, Amanda received her gene therapy at the NIH.

She is doing well following the injection and we are hopeful.

02/18/2016

We have the details of the service honoring Chrissy's life that's going to take place in Texas.
Visitation will take place at Greenwood Chapel, 3100 White Settlement Rd, Fort Worth, TX, from 6-8PM on Tuesday, February 23rd.
The memorial service will be held at First Baptist Church Euless, 1000 W Airport Fwy, Euless, TX 76039, at 1PM on Wednesday, February 24th. Graveside service to follow. Internment will be at Greenwood Memorial Park.

Address

Washington D.C., DC

Telephone

+12024230807

Website

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