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Thank you for taking the time to learn about Tobin’s Journey.

We have provided some helpful links regarding Canavan disease.

We would appreciate it if you could donate or share to help save Tobin Grace. 


If you would like to have your Canavan story featured as well, please email canavan.disease.sucks@gmail.com.

Sharing Tobin’s story, and donating to help fund the trials, can help to spread awareness about Canavan Disease. Please join our fight for this ultra-rare progressive genetic disease.

You could be the person that shares this information with the right set of eyes. You could be the right set of eyes. Hit DONATE, and BE THE RIGHT SET OF EYES!

Anything you can donate helps us get closer to our goals of helping to fund the development of a cure for Canavan Disease.

Hitting Share helps spread awareness, which is just as vital as donations.

Tobin thanks you!

Please keep all comments respectful, trolling will not be tolerated. Spam comments will not be tolerated either.


Social Media

Here’s our recent posts on Tobin’s Journey:

3 days ago

Tobins Journey

My beautiful girl this morning!!

Look at how long and amazing her hair is 🥰

Donations are still desperately needed to save Tobin Grace please continue to donate and share Tobins story with everyone you meet!!


Venmo: @SavingTobinGrace

Don’t forget to checkout Peregrine Kidswear!! Tobin is wearing their Floral 2 Piece Pajamas and they are so buttery soft 🖤 Use code: SAVINGTOBINGRACE at checkout to save 10%!!

#tobinstime #curecanavan #canavandisease #peregrinekidswear #bamboopajamas #tubietoddler

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4 days ago

Tobins Journey

Last night to pick up some gorgeous handmade pieces that empower families out of poverty, trafficking and more and 20% of your purchases come back to us!!!

How humbling for us to know that you are changing so many lives right from where you are and believing in us too! It has been so cold in Iowa, that this blanket looks like a huge win! It is hand loomed an only $38! That's such a steal!

Find your own world changing treasures here, and thank you for changing our lives too: www.mytradesofhope.com/parties/109733


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5 days ago

Tobins Journey

Just less than 2 weeks away! 🚲

Here are the details, so please share and tell your friends! Unable to make the bike ride? Stop by Chrome Horse at the end or make a donation!


#Tobinstime #tobinsjouney #everydollarcounts #iowastrong

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1 week ago

Tobins Journey

Our fundraiser with Trades of Hope is ending soon!

If you haven't checked out their pieces, you definitely need to take a look! They are all handmade, fair trade, and truly stunning! A perfect gift idea in this season that truly creates hope for other families around the world - raising them up out of poverty, trafficking, and other desperate situations - while also blessing our family too. They have so many things from jewelry to bags, scarves, and home decor. And look at these ornaments?! Aren't these puppies just adorable?? We are only $125 from our first goal too, so take a look and see how you can change the world from where you are!


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1 week ago

Tobins Journey

In April 2019 the FDA granted permission for the research to proceed with producing the plasmids — genetically engineered DNA molecules with the healthy ASPA gene. The plasmids will be ready in the next few weeks followed by further testing to ensure safety. In October or November the laboratory will be ready to begin production of the vector, which is the benign virus that will deliver the missing gene to the patients’ brains.

To summarize, the projected timeline is as follows:
- October 2019: Completion of plasmid production and testing
- November 2019: Laboratory begins vector production
- December 2019: Completion of vector production
- January or February 2020: we hope to get definitive approval from the FDA, which will review vector production and procedures, and hopefully approve the brain surgery protocols
- February or March 2020: Vector with corrected ASPA gene will be delivered to the first Canavan child

BUT in order to meet these milestones we DESPERATELY NEED the money to fund these complex stages of production. We are in home-stretch mode now! Every dollar donated goes directly toward the manufacturing of the viral vectors that will save our children’s lives.

The research team needs $1 million by the end of October and another $1.5 million by the end of December to make the potential cure a reality.

Please help us with the final push to raise the funds for Benny and Josh from Brooklyn, Tobin Grace from Iowa, California twins Yael and Yoel, Artyom and Olga from Russia, Marguerita from Italy, and Malgosia from Poland. Funds are desperately needed in order to bring this treatment to life! If we don’t raise the money in time there will be further delays, which our children cannot afford! Time is literally brain - the longer we wait, the more nerve cells get damaged each day.



Venmo: @SavingTobinGrace

Thank you for reading. Thank you for caring.

Cure Canavan Fund

#tobinstime #curecanavan #canavandisease #curecanavanfund #togetherwecan

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Here’s some of our recent pictures:

This Song was written by Nicole Miranda and sang by Brooke Harmer:

I am so thankful for the people in our life’s!! ⚠️grab your tissues⚠️This song was written by Nicole Miranda and sang by Brooke Harmer!! Thank you two so incredibly much!! It’s truly amazing 🙌🏻Please donate at: https://www.gofundme.com/save-tobin-grace

Posted by Tobins Journey on Thursday, January 3, 2019