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Welcome to the our Family Page for Anna Odlaug

Odlaug Nusslock Brennan

Odlaug Nusslock Brennan

Thank you for visiting.

Andrew and Kimberly blessed us in September 2017 with the birth of Anna Grace. In her short life she has already given us so much love and joy.

Anna was diagnosed with Dravet syndrome in early May 2018 after suffering from a number of prolonged seizures. Dravet syndrome is a rare and catastrophic form of epilepsy beginning in childhood. While shocked and saddened by the news, we are intent to remain optimistic and focus on the reasons for hope, of which there are many. A video of their journey with Anna and Dravet (April 2019) can be found here: youtube.com/watch?v=bFT-tOf_L7I&feature=youtu.be

The mission of DSF is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. Our families fundraising efforts will help with this important cause.

The experts admit that in some ways treatment standards are variable, with treatment regimens based on trial and error rather than the specific SCN1A mutation identified in a child. There needs to be more research to correlate mutation with treatment, and better yet a cure. Two companies with gene therapy products hopefully will be in the clinic in 2020 (eg. Stokes and Encoded). They both provide the hope of a cure.

We raised over $112,000 in 2018. A great start on our $1 million goal. Our total also includes other family fundraisers. Andrew, who is an accomplished marathoner, ran the Chicago and New York City marathons in 2018 for Anna, Kim and all of the brave Dravet children. He raised over $10,000.

Kim's sister Chelsea Nusslock has raised over $43,000 with her platform tennis network. Andrew's sister Erika also has raised over $7500 with her fundraising page at dravetfoundation.rallybound.org/fearless

At the March 30, 2019 Dance for Dravet event in St. Louis, that was sponsored by the Brennan Family, we raised over $183,000! Photos from the event can be found here at dravetfoundation.org/dance-for-dravet-2019

Our family plans to do additional fundraisers in the months and years ahead. Never give up and find a cure is our mantra. Our sincere thanks for anything you can contribute.

Anna's grandfather Ted joined the Dravet Foundation Board in March 2019 to offer his experience and know-how of working in the healthcare industry to the foundation and patient community. Our entire family is committed to supporting Anna and the work of the foundation.

This cause is very important to us, and we appreciate all the support we can get for our dear Anna and all the children like her!

Together we can make a difference!

Sincerely yours,

The Odlaug, Nusslock and Brennan Families

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Comments

$353,535.68
raised of $1,000,000 goal
 

Recent Donations

$1,000.00
1. CWCarolyn And Henry Wiggins
$500.00
2. AEAbbVie Employee Engagement Fund
Donation and matching gift - Torben Neelands
$250.00
3. RGRichard Goelz
Pat. Jennie and I wish Anna and your entire family all the Best. You are in our prayers Richard
$500.00
4. YKYolande Knight
$50.00
5. MRMary Roemer
$100.00
6. JJJudith Jump
Hope to see you soon. Good luck.