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Milestones for Maxwell

$242,261 of $1.0M goal

Raised by 1,063 people in 5 months
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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First a fundraising update – we have raised over $200,000 with over 1,300 contributors since we started our campaign four months ago.

Thank you! Thank you! Thank you!

Are you in Denver, the Golden Area or Pueblo and would like to support our efforts to cure Maxwell's rare neurological disease? Maxwell Norman will be making a personal appearance at every upcoming event. This means picture opportunities, snuggles and possibly a little drool. Maxwell is even bringing his twin sister, Ms. Riley James! Please beware and watch out for paparazzi. Riley has planned a speech about how much she loves her brother as well as how much she loves Elmo and apple juice.

Fit4Mom on April 12th at Wash Park

Join us for a Stroller Strides Class to support sweet Maxwell! Meet outside at Wash Park for a fun hour long workout and show your support for Maxwell. Meet at the corner of Louisiana and Franklin at 9:30am for a mom/baby workout class followed by a Rocky Mountain Aardvark class! Buy your tickets here: https://www.eventbrite.com/e/fit4mom-loves-maxwell-tickets-55974641660

Goldmine Cupcakes on April 13th in Golden

Join us for a Mommy/Son date night with pizza, cupcakes, popcorn, photo booth, hayrides and of course – CUPCAKES! Tickets are $25 for the mommy/son couple with a portion of the proceeds going directly to #MilestonesforMaxwell. Call (720) 328-9531 to reserve your spot today.

Do Drop Inn on April 15th in Pueblo West

Please join us for a fundraiser at the Do Drop Pueblo West to support #MilestonesforMaxwell! Look forward to a night of delicious pasta, a silent auction and of course Maxwell! Tickets are $12 each. There will be a large silent auction with microblading and lash lifts for the ladies, an autographed Von Miller jersey and golf packages for the gentlemen and Caribbean vacations and Rockies tickets for the family. We hope to see you there for some red carpet pictures. The event will begin at 4pm and end at 8pm. It would be really helpful for headcount planning to buy the tickets in advance! Here is the link: https://www.eventbrite.com/e/milestones-for-maxwell-do-drop-inn-pueblo-west-tickets-56538803082?aff=ebdssbdestsearch

Did I mention that MAXWELL will make an in-person appearance at all of the events!?!
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The Twins Turn Two on the 27th! 

We celebrated with a special celebration with all of their friends at Great Play in Cherry Creek over the weekend.  Maxwell and Riley were dressed as cowboys with matching vests, boots and sparkly hats.

Last year, I spent months planning every detail of the twin’s first birthday.  I was so excited that the party got a little out of control!  We had over 100 guests, a face painter, balloon artist and a dessert bar with 15 different desserts.  The dessert bar was so successful that we had a subsequent ant infestation.

One of my favorite moments of any 1st birthday is a smash cake.  For Maxwell, the smash cake represented all of my fear, anxiety and heartache.
 
Maxwell could not use his hands.  He had never touched my face or reached for a toy.  I knew he would not indulge in the smash cake and I didn’t want people to notice or ask questions.  Mark and I knew something was very wrong with Maxwell but we had no idea what to even tell people because we didn’t have a diagnosis.  I couldn’t physically talk about it without bursting into tears.

As the days led up to the party, we considered cancelling to avoid the situation entire.  We ultimately decided that Maxwell and Riley’s 1st birthday was a celebration of their beautiful lives and the immense joy they bring us daily.  We refused to let fear overshadow a special day for these little babies.

 Today is bittersweet.  I reflect on the past year and truthfully, it has been very hard and mostly a blur.  We heard the term SLC6A1 for the first time, followed scientists all over the world, organized a scientific symposium, started fundraising and pulled more all-nighters than all of college combined.  On the home front, Maxwell has endured 10 therapy sessions a week – physical, occupation, speech, horse, swim, etc.  Riley has maintained her joyous tenacity for life.  It has been very difficult to balance becoming an honorary molecular biologist, chief fundraiser, running a patient organization and trying to be the best mother in the world.  Our family has more perspective now than I ever could have imagined.  I regularly wonder why my former life, career, relationships, etc; once stressed me out.  We have cut out the noise entirely.

The worst symptoms of SLC6A1 begin between the ages of 3 and 4 years.  We still have a $750,000 funding gap.  We are racing against time to raise money, advance the clinical trial and give Maxwell a shot at life.  Birthdays are a reminder that time continues to march forward.   I would be lying if I said I wasn’t terrified.  

Like last year, we are trying our best not allow fear to overshadow the twin's special day.  SLC6A1 may not steal any birthday joy.  I am so proud to be their mommy and honored that God entrusted them to us.  There is nothing better in life than Maxwell & Riley.
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60 Minutes aired a story about gene replacement therapy CURING sickle cell anemia.   The story highlighted a woman experiencing pain as “very sharp, like stabbing, almost feels like bone-crushing pain.” She was barely capable of physical activity, spent weeks a year hospitalized and didn’t know if she would live into her 30’s.  Just 9 months after gene therapy, this woman can now swim, run and participate in jiu jitsu class.   60 Minutes showed footage of her joyfully being slammed to the ground in jiu jitsu – something that could have nearly killed her.

“I believe that this looks like a cure,” says Dr. Francis Collins, director of the National Institutes of Health. “I got to be careful. But from every angle that I know how to size this up, this looks like a cure.”
Gene therapy is in clinical trial for thousands of genetic conditions.  My eyes filled with tears watching this woman fully recover and living a life she didn’t know existed.   This is the reality of gene therapy – life for thousands of people afflicted by diseases that were deemed hopeless. 

Half of all rare disease diagnoses are children and 30% of those children will not live to see their 5th birthday. 
If you want to cry happy tears, google the drug Spinrazza and see children with spinal muscular atrophy walking up stairs after being wheelchair bound.  Death is no longer the only outcome for these diseases.  

Dr. Collins sees more reason to hope. “There are 7,000 genetic diseases for which we know the precise DNA misspelling,” he tells LaPook. “Couldn’t this same strategy … set of principles work for lots of those, maybe someday all of them?”

SLC6A1 is one of the diseases that can be cured by gene therapy and are relentlessly forging toward the cure.

Watch the Full Episode Here:   https://www.cbsnews.com/news/more-on-the-trial-aiming-to-cure-sickle-cell-60-minutes/.

We could not get there without all of YOUR help.
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Thrive Mortgage hosted a gala Friday evening to benefit Maxwell and the night was absolutely incredible. Guests arrived to a #MilestonesForMaxwell red carpet before heading into the beautiful event.

The event was so much fun with so many games! The silent auction featured artwork from Lindsay Jane Ternes Fine Art and unique sports memorabilia. The live auction surprised everyone with irresistible trips to Africa, a year supply of gourmet steaks, a fly-fishing trip and golfing excursions. In total, 6 trips to Africa were sold!

The Colorado Avalanche players were SO supportive of Maxwell! I have pictures below showing J.T. Compher, Ryan Graves & Tyson Jost holding Maxwell’s sign. Ryan Graves (white shirt) is just shy of 7 feet tall. Marc Mosher was incredibly kind as well and brought a beautiful date (his daughter). Leah Block from the Bachelor came to support with her beautiful smile. Leah has been one of Maxwell's first and most fun supporters.

Laura Leavy from Thrive Mortgage made all of this happen. Laura selected us to be the recipient of her beautiful event based off of our GoFundMe. She did this all for a stranger…someone she had never met. Laura truly is one of Maxwell’s guardian angels.

The final numbers are still coming in but I will update GoFundMe with the final proceeds amount! Thank you to all of our friends & family that came to support Maxwell.

GoFundMe doesn't have great picture options but I posted more to our blog. You can visit my blog here: https://slc6a1connect.org/2019/03/11/maxwells-gala-recap/.
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$242,261 of $1.0M goal

Raised by 1,063 people in 5 months
Funds raised will benefit:
SLC6A1 Connect
Certified Charity
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Denver, CO
EIN: 831415567
How it Works
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* 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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