Milestones for Maxwell

$503,022 of $1.0M goal

Raised by 1,962 people in 7 months
Created November 14, 2018
After 2 years of IVF, Maxwell and Riley Freed were born on March 27, 2017 and made us the most happy people on the planet.  In an instant, our lives were filled with purpose while we counted two sets of 10 tiny fingers and 10 tiny toes.  We were ecstatic, content, and life was perfect.

At around 4 months, we noticed that Maxwell wasn't progressing like Riley.  Maxwell showed intent, but could not use his hands and could barely move.  Well-meaning family and friends reassured us that everything was fine but mother's intuition said differently.  Riley's milestones became bittersweet as it felt like Maxwell was slipping away in my arms.  I was helpless.  My fear turned to sheer panic as doctors desperately searched for answers along with us.  In May, my husband and I were led to a cold, sterile diagnosis room at Children’s Hospital where doctors confirmed the unspeakable.  Maxwell had a rare, sad, and completely unfair genetic disease that was essentially wreaking havoc on his neurological system.  The disease is too rare for a formal name and is only known by the gene - SLC6A1.  SLC6A1 causes developmental disabilities, a movement disorder and the onset of a debilitating form of epilepsy along with regression between 3 - 4 years.  The solemn faced doctors said nothing could be done as they looked at us with sympathy.  I saw my husband's bottom lip start to quiver.  The prognosis was bad.  It was the darkest moment of my existence.  It was sadness for which there are no words and a sadness I didn’t know existed.  I was robbed of my perfect life, but mostly I mourned for the life I envisioned for Maxwell when I heard his first sweet cry in the delivery room.
 
It was in that moment I decided to fight.  

Fight like I had never fought before.

Fight like a mother.  
 
I left my career and began calling scientists and I found hope.  Maxwell’s disease is a candidate for gene therapy replacement which would restore his neurological system function.  A group of scientists at UT Southwestern in Dallas was willing to develop the therapy that would not only help Maxwell, but every child with this condition.  This research will also directly advance treatments in epilepsy, autism, and schizophrenia.  My husband and I have used our resources for initial funding, but we still need to raise $1,000,000 in the next year to advance treatment from bench to bedside.  If we do not raise the money, the research will be tabled due to lack of funding. 

 We ask for your help today to become part of something larger than yourself.  We have an opportunity here to impact a large group of children that need help. 

 How can you help?
* Every little bit help.  Even $5 inches us closer to our goal.   If you plan to donate, we retain much more of your donation if it is made via our website:  https://slc6a1connect.org/donate-here/ 
* Please share our Gofundme https://www.gofundme.com/slc6a1-connect/
* Sign up for our blog: www.slc6a1connect.org, scroll down and add your name to the subscription box.
* Hashtag us #milestonesformaxwell, follow us on Instagram https://www.instagram.com/milestones_for_maxwell/ and like us on Facebook.
* We are a 501c3 and would like to join corporate giving platforms - our website is www.slc6a1connect.org



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1) Is gene therapy proven?

Absolutely.  Just google the drug Spinrazza for spinal muscular atrophy, Kymriah for acute lymphoblastic leukemia, or the clinical trial for giant axonal neuropathy.   The key for all of these pediatric conditions is early treatment.  Children are being given a second chance.

2) Does gene therapy for SLC6A1 help other, more common diseases?

A mutation in SLC6A1 causes a disruption in the chief inhibitory neurotransmitter known as GABA.  GABA is directly linked with epilepsy, autism, schizophrenia as well as many other neurological disorders.


3) Is my donation tax-deductible?

Your donations are fully tax deductible as we are a 501c3.  Our EIN is 83-1415567.  If you made a donation over $250 you will receive via email and below $249, your credit card records are sufficient. 


4) My employer matches donations. Does it work on this platform?

Please submit your donation for a company match.  Many companies send checks for the match which can be sent to the address below:

SLC6A1 Connect
ATTN:  Amber Freed
2426 South Clayton
Denver, CO 80210


5) Do you have a website?

www.SLC6A1Connect.org:  Please sign up for our newsletter on the website to follow our progress.


6) Where will proceeds go?


All proceeds will go to fund SLC6A1research at UT Southwestern.  We are strictly volunteer based moms working toward a cure.


7) Why is this disease so rare?

The gene that causes this disease was discovered in 2015 and  doctors didn't begin testing for the disease until late 2016.  There are most likely thousands of people with this disease but they don't know they have it.  Part of our mission is to raise awareness so we can reach more patients.
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My husband, Mark Freed, is the unsung hero of our little family.

He is a symbol of strength and unconditional love, not just for me and our children, but to everyone around him. On my worst days, he is the calm “voice of reason,” and on my best days, he’s the first to celebrate. Maxwell and Riley’s faces light up with pure joy when he walks through the door at night. Riley immediately asks him to “wrestle” because she wants to be thrown in the air and have her belly tickled.

Mark has made a Friday afternoon tradition of driving her or Maxwell around in the golf cart for an hour while plying them with pretzels and milkshakes, and our friends are always happy to let a golf foursome turn into a golf 4.5-some! Mark has even gotten the twins interested in golf, Penn State football, and watching him smoke meats in the “Green Egg.” Mark loves Maxwell and Riley with his entire soul and is happy to work hard to provide them with a good life, all while demanding very little in return. Toddler smooches and an “I love you, Daddy!” are sufficient for him.

I receive lots of accolades for my accomplishments in driving the treatment forward for Maxwell and other children like him, and many of those accolades come from Mark. In reality, Mark and I are equal partners in this battle for our son–he’s just the quieter half. He’s the person I rely upon emotionally, who kisses the twins’ boo-boos while juggling work, parenthood, and SLC6A1 Connect. I don’t know how he does it! So today, we celebrate our wonderful hero, husband and father, Mark Freed!

We love you, Marky!
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The Huffington Post recently devoted time with my family to fully understand our daily struggles as we battle a rare disease to save Maxwell. 

The journalist and photographer deeply cared about Maxwell and felt our sense of urgency as we frantically race to develop a gene replacement therapy for Maxwell before it is too late. 

They witnessed the exhaustion and tears of leading scientists while trying to raise upwards of $1,000,000. 

Our email communication included many 2am time stamps and phone calls where I was slurring my words from an all-nighter.  Not to mention doing all of this while caring for two-year old twins that need a semblance of a normal childhood.  I cannot allow “this” to detract from their beautiful lives.  I try to make Maxwell’s 12+ therapy sessions a week enjoyable even though it’s physically and mentally straining.  And then there is Riley, Maxwell’s sassy pants twin sister who deserves time focused on her specific needs.  She cannot fall into the forgotten child category.

This is not easy and I wouldn’t wish it upon anyone.  In fact, I am working day and night to ensure there is not another Freed family.   

Thank you to the HuffPost for your beautiful coverage of our little family in a big fight to change to this world.

On a funny note, The Huffpost published this picture of me taking a rest:)

Please read here: https://www.huffpost.com/entry/life-and-debt-searching-for-a-million-dollar-miracle_n_5ced991fe4b0793c2346b0ca?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAALFLBaSt_VdrlmQbLCt6Y4l4hOd8LUuYiWQ9qugheq-_2RjYMlhNN1gJhJAUlqzuF-Sn65o0jVq-p0um--_26792Pyubm8y2F1jfaGkoaSnk83OFiQVv5v9b-CKCPV6Z4YT5qw6BYllPf6o1uu52Jgy-Iexsx7gy_mkAs-yUpCIn
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Janus Charity Challenge

I spent my career in equity analysis and made some very dear friends along the way, most recently at Janus Henderson Investors. When doctors began warning us that Maxwell was not well, I left my career in a frazzled, frantic state. I tried to be strong the day I resigned from Janus, but I simply couldn’t hold it together. I burst into tears in front of my team leader and HR representative, barely able to form the necessary words. I was finally able to communicate that my son has a medical emergency and that I needed to leave immediately. Everyone was empathetic, concerned and wanted to help. I tried to complete a final walk through to say formal goodbyes, but I was too upset to say all that I wanted to say. I sent an informal goodbye to the group e-mail list and slowly reached back out as regained my composure.

Lisa Neison and Rich Carney are two dear friends from Janus Henderson, and some of the most authentic people I know. They were among the first friends to learn I was having twins, and Lisa even held a baby shower for me at Janus! After the twins were born, Lisa and Rich always asked for updates and wanted to see pictures, and Lisa spent many work lunches helping us with feeding time. When Maxwell was diagnosed, Lisa and Rich were both huge sources of support, understanding and grieving beside me, but also cheering me on as I chased scientists all over the world. They told me to be fearless and relentless, and I listened wholeheartedly and made sure to keep them updated.

Janus Henderson holds an annual charity challenge, for a $75,000 grand prize, in a Shark Tank format where you have 10 minutes to pitch your chosen charity. Lisa and Rich championed SLC6A1 Connect and we put together an all-star pitch. One of Maxwell’s many guardian angels, Dr. Larson from Children’s Hospital of Colorado, even came to speak! Dr. Larson diagnosed Maxwell and has been a huge advocate for him and the rare disease community. We practiced many times together and I privately practiced on my mostly indifferent cat at least 100 times. When the day of the pitch finally arrived, I was both nervous and excited. Many of my former Janus colleagues came to cheer me on, and seeing their familiar faces in the audience was comforting. The 10 minutes went by in such a flash, I barely remember the actual pitch. The “twinado” made their grand appearance for the final minute and stole everyone’s hearts. Maxwell was dressed as smart as Prince George (but looked even cuter!), and Riley was a fashion princess in her sunflower sundress. Needless to say, their appearance helped to seal the deal. But then the wait began…

The competition was held among multiple international Janus Henderson locations, and due to the time difference, the winner wasn’t announced until the following day. I couldn’t attend the presentation as I was on a flight to attend a conference at the National Institute of Health, but I compulsively checked my phone for updates during the long flight. Then, as we were about to land, I accepted a Facetime from Lisa and Rich who were calling to tell me we won the charity challenge!

I was screaming and ugly crying as we landed, and in retrospect I was probably lucky an air marshal didn’t apprehend me for making a scene.
The $80,000 prize gets us to a total of $500,000 toward our goal of $1,000,000. We’re halfway there! We are halfway to our first goal of developing a gene therapy to help every child affected with SLC6A1.

Thank you to Lisa, Rich and Janus Henderson Investors for believing in SLC6A1 Connect.
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Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease.  Nominations are accepted in the areas of advocacy, medical care and treatment, and science and technology.

I was nominated this year to receive the reward! 

I am so proud and honored.  I am often asked what drives the 70 hour weeks, travel and tears.  The answer is Maxwell's little face and all of the other children affected by this horrible neurological disease.  I live the other the family's sad stories and hear the hopelessness in their voice - like a child requiring plastic surgery from breaking their nose seizing.  These kids did nothing to deserve their suffering.  Nobody can advocate better than a mother for her child and I will not stop until a cure is found.
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$503,022 of $1.0M goal

Raised by 1,962 people in 7 months
Created November 14, 2018
Funds raised will benefit:
SLC6A1 Connect
Certified Charity
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Denver, CO
EIN: 831415567
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