Monthly Archives: April 2015

Rest in Peace, Maryann

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Brian Josefowicz, one of Kelly’s best friends, lost his beautiful mother last week after a short battle with cancer. She was only fifty-nine years old.

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Maryann had the most beautiful smile and flashed it every time we saw her. One of the last times we hung out was with she and her husband Mike at The Mitten Bar in Ludington. Their son Brian and his wife Megan own The Mitten Bar so we thought we would stop to say hi and wish them a Happy New Year before heading up north for the night. We toasted to a good life that afternoon, but today we toast to Maryanne a farewell. May you rest in peace.

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We’re Still Hopeful

Corey and Mom

Last month Corey sent an email to the Food and Drug Administration and a handful of US senators asking them to grant accelerated approval to GM604, a drug that’s had positive results with ALS patients but hasn’t been released to the public yet. He sent the email never thinking he’d get a response, but a few days ago he did.

Corey wrote:

My beautiful mother.

Dear decision makers,

GM604 is the first bit of hope that my family has felt in more than two years.

My beautiful mother has ALS and in just two short years she’s gone from an unwavering source of light and energy to someone who can no longer walk or speak or do anything for herself. I don’t really know how to make you understand how heartbroken my family members are, so I’m going to ask that you visit my mom’s blog, which she writes using her eyes, and spend ten minutes experiencing what it’s like to be trapped inside of your own body.

I’m begging you to please approve this drug.

Sincerely,

Corey Lambert

P.S. If you’d like to speak with me about this, please call me at PHONE NUMBER.

The FDA’s response:

Re: My beautiful mother.

Dear Corey,

Thank you for sharing your story with us at the FDA and taking the time to advocate and write on behalf of people who are affected by ALS. We are very sorry to learn about your mother and the challenges she and your family must face every day. We understand the importance of making medications available to help ALS patients like her.

FDA is working closely with the sponsor on the investigational drug GM604. While a drug is being investigated we cannot comment on its status (21 CFR 314.430). At this time, information about GM604 is considered confidential and is only releasable by the sponsor. For the most up-to-date information, please contact Genervon directly: info@genervon.com.

We truly appreciate being able to read your comments regarding this investigational drug and your mother’s blog. Thank you again for writing.

Sincerely,

Catherine Chew, PharmD
Deputy Director, Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration

No matter what happens, thank you for your beautiful email, Corey. I love you.

Mosquitoes

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Mosquitos are my enemy. While we were in Florida we decided to go to the pool before Harrison went to sleep for the night. The sun had just set and the air was warm, a perfect night for swimming, until I heard a mosquito buzz around my head. Within seconds more mosquitos started swarming and buzzing around my head and my body so I yelled for Mark to help me. I was defenseless without my arms and the ability to move. I felt so helpless.

God Plowed a Path

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Our trip to Florida was perfectly orchestrated by God and carried out by Mark, Bryan, Kelly and Jim and LeeAnn White. Now we are about to enter a more difficult path in my ALS journey as I continue to decline. My physical body is a lot like a paraplegic which makes for a lot of extra work and worry for the people around me. I pray that God will continue to plow a path filled with grace and astounding beauty for all of us.

I hope everyone had a beautiful, loved-filled Easter.