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Milestones for Maxwell

$126,476 of $1.0M goal

Raised by 825 people in 3 months
Created November 14, 2018
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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Our story will air on 9News tomorrow at 4pm with Kim Christiansen! A link to the story will also be posted on the 9News Facebook page. I will share as well.

Prepare for your television to be covered with twin cuteness!
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Charity Gala – March 8th, 2019

Maxwell is surrounded by guardian angels and his army grows daily. One of his guardian angels is a woman named Laura Leavy with Thrive Mortgage. Thrive Mortgage & Legend Title host an annual business mixer & client appreciation charity gala. Laura Leavy selected our non-profit to be the recipient of the gala this year! We could not be more humbled, honored or excited for this fun filled event. There will be a red carpet, wine pull, raffle, silent and live auction items. The evening is going to be an absolute blast with confirmed celebrities:

Colorado Forward JT Compher
Colorado Defensemen Nikita Zadorov
PGA Tour Canada Pro James Love
NFL & CU Buffalo Justin Drescher

Event details:

Friday, March 8th, 2019
Infinity Park Events Center
7:00pm – 10:00pm
$40 per Ticket
Business Attire

Please join us for the star studded event! We look forwarding to seeing you there! Thank you again to Thrive Mortgage & Legend Title.

Tickets can be purchased by going to www.Eventbrite.com and searching for Milestones for Maxwell.
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Maxwell and Riley celebrated Valentine’s Day together. They enjoyed a culinary adventure of chocolate chip pancakes with fresh squeezed orange juice over candlelight high chairs. The twins enjoyed each other’s company and it's too cute not to share. They are best friends.

Happy Valentine's Day!
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The video is now available from our appearance on Colorado's Best yesterday! Great Play will be hosting a fundraiser for Maxwell on March 7th from 5:30pm - 9pm. We are so excited and thankful to Great Play for loving Maxwell.
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$126,476 of $1.0M goal

Raised by 825 people in 3 months
Created November 14, 2018
Funds raised will benefit:
SLC6A1 Connect
Certified Charity
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Denver, CO
EIN: 831415567
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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