Utah Kids Foundation

Welcome to the main page of the Utah Kids Foundation

Over members and growing!

Be sure to check-out our Events page for special-needs family-friendly activities for kids as well as training and educational workshops (special-needs and otherwise) that cater more to the parents.

Other "hot topics" include our UKF Forum on Facebook and our Forum Rules (always a crowd-pleaser).

ukflogo
lionpacks

Every August, we offer LionPacks to help those in our community in need of school supplies. Below is a list of school supplies we collect throughout the year. Donations are much appreciated.

  • Backpacks
  • Spiral notebooks
  • Packs of lined paper
  • 24 count crayons
  • Pencils
  • Pens
  • Pencil boxes
  • Hand sanitizers
  • Small tissue packs
  • Folders
  • 12 count colored pencils
  • 8+ count colored markers
  • Scissors
  • Glue
  • Glue sticks
  • Erasers
  • Pencil sharpeners
  • 1 inch binders

Application forms are available late July of each year.

Thanks to a generous grant provided by Rocky Mountain Power, we are grateful to offer out Transportation Assistance Program (TAP). Families who live outside of the UTA transit area may apply to receive up to $50 per year in either a check or gift card form. Families must also be willing to track all medical mileage driven for 2 months and promptly return their mileage log. Families are able to apply for a second year on the first January following the first full calendar year after their initial application. For example, if you applied in July of 2019, you would not be eligible again until January 1st, 2021. Failure to return the mileage logs by the 3rd month following acceptance into the program will result in not being able to apply for assistance. Applications will continue to be funded as long as grant money is available. To apply, please click on the button below:

Transportation Assistance Program (TAP)

When re-homing medical supplies, priority is given to those without DME coverage.

We rotate the list based-upon location and who has been waiting the longest for supplies. Contact an admin for special circumstances.

Sign DME Form
stuffstocking

The Stuff the Stocking Fund came to life in 2014. We had the goal of assisting 3 families who were struggling with medical debt and did not qualify for other Christmas assistance programs. We were able to assist 81 individuals in our first year! This year we are hoping to assist up to 150 individuals with at least one special needs child in the home who are struggling and needing assistance. We are now accepting cash and general gift donations (please see our donate menu tab for ideas). Our applications for those in need will open this fall.

(to find-out more, click the banner button below)

NOTE: Applications for assistance are not available until October 1st.

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Sponsorship
Levels

Benefits & Recognition

Friends
Bronze
Silver
Gold
Platinum
Diamond
$100
$500
$1000
$2500
$5000
$10000
Logo featured on Flyers, Brochures & Hand outs
 Logo and / or Website Link featured on UKF’s Website & Social Media Pages
Logo featured on Promotional Event Banners
Logo featured on Main Stage Banner at Event
10’ x 10’ Vendor Booth Space
Company mentioned in UKF’s Quarterly Newsletter

To add a new event to the calendar please contact our Events Coordinator at events@utahkidsfoundation.com.

Annual Events

  • Easter Egg Hunt
  • Yard Sale
  • Christmas in July
  • LionPacks
  • Unbirthday Party
  • Online Auction
  • Stuff the Stocking

Calendar

Main Number: 1-801-770-3166
Name Position Ext Email
Syndi Knowlton CEO / Executive Director 705 syndi@utahkidsfoundation.com
Nicole Ludwig Vice President 707 nicole@utahkidsfoundation.com
Melissa Christensen Secretary 700 melissa@utahkidsfoundation.com
Molly Barrington Utah County Parent Advocate 704 molly@utahkidsfoundation.com
Nadine Braxton Events Calendar events@utahkidsfoundation.com
Tammy Will Director of Philanthropy tammy@utahkidsfoundation.com
Chelsey Stephens Events Manager 701 chelsey@utahkidsfoundation.com
Becky Danco Weber County Parent Advocate 708 becky@utahkidsfoundation.com
Kathlean Hinnen Inventory Assistant 703 kathlean@utahkidsfoundation.com
Kimberly Butterfield Inventory Manager 702 kimberly@utahkidsfoundation.com
Tom Knowlton Webmaster webmaster@utahkidsfoundation.com

. . : : under construction : : . .

The mission of the Utah Kids Foundation is to support all special needs families in Utah by:

  1. Sharing information about doctors and resources in the community.
  2. Facilitating the legal exchange of spare supplies.
  3. Providing comfort and support when our children are inpatient.
  4. Sharing community events that are open to and accessible to special needs families



We have a short video introduction to Utah Kids Foundation on YouTube featuring our CEO / Executive Director, Syndi Knowlton:



Syndi Knowlton

(CEO / Executive Director)

Syndi Knowlton is no stranger to the special needs community. At the age of 9, her youngest brother was born and later diagnosed with Aspbergers and Tourette’s syndrome. She and her husband Tom have 3 children, all with special needs. Her oldest daughter has Ehler-Danlos Syndrome. Her son is on the Autism spectrum. Her youngest daughter has Rett Syndrome and Angelman Syndrome. They are her inspiration.

Syndi owned an adaptive clothing line for 4 years before she moved on to advocacy work. She hosted 2 successful fundraisers in Utah for Rett Syndrome in 2009 and 2010. In 2012, she began an online support network on Facebook called Utah Kids.

In 2012, Syndi joined the Epilepsy Association of Utah working with Syndrome Specific Disorders. Syndi recognized that information for almost any need could be found on the internet but it was often a tireless process… thus the birth of the Utah Kids Foundation. Currently, the Utah Kids Foundation has over members

Syndi's email is:   syndi@utahkidsfoundation.com





Nicole Ludwig

(Vice President)

Nicole Ludwig is a stay at home mom of 3 kids (4 if you count the husband). Her oldest is her son has PTSD, DMDD, type 3 ADHD, and possibly ASD (causing academic and social delays). He also has other medical issues. Her middle daughter is medically considered neurotypical, although she shows signs of anxiety and precocious puberty. Her youngest daughter has been through a ton in her little life. She was diagnosed with FTT at 8 months old and was on the ng feeding tube for a year and a half, had tons of issues with her kidneys (now resolved), failed a swallow study and has officially joined the tubie world by getting a g-tube placed.

She brings with her a willingness and desire to learn, help and research. She has the ability to mentally store information and recall it as needed to help others out. She dedicates her life to her kids and making sure they are well taken care of. She will do her best to help anyone in need.

In her spare time, she likes to pull weeds, play video games with her kids, surf facebook, color in books and on sidewalks, research information for her family and for others and create projects only to half-finish them. When able, she enjoys camping, fishing and riding her mom's ATVs.


Nicole's email is:   nicole@utahkidsfoundation.com





Melissa Christensen

(Secretary)

Melissa Christensen brings more than 12 years of personal experience dealing with special needs kids to the Utah Kids Foundation. She and her husband Scott have one child that is Autistic and 1 child that has been diagnosed with Microcephaly early in his life, but since has been diagnosed with many other things. They've spent many hours in therapy, doctors’ offices and hospitals dealing with the things that plague their children. They've become experts in dealing with many things...from feeding tubes, to central lines, doctors, therapy and yes even poop. : ) Melissa looks forward to being able to share what she has learned in order to help other families and make their lives easier.

She stands ready to help no matter what the situation. She's elected to be responsible for helping families in Northern Utah. Please email her at: melissa@utahkidsfoundation.com

with any requests, questions, etc. You can also find Melissa on Facebook. She looks forward to getting to know each family.





Molly Barrington

(Utah County Parent Advocate)

Hello, my name is Molly Barrington and I live in Pleasant Grove. I grew up with three brothers. Two of them had Lowe Syndrome which caused very severe disabilities and complex medical issues. My husband, Dave, and I have one son who is our pride and joy. Our Jonny has Lowe syndrome also. I have worked with the special needs community in one form or another, my entire life. I have also worked professionally as a medical assistant.

I really enjoy working with Utah Kids Foundation because of the support that we are able to give each other. Everyone needs to be heard and understood and this is a place where that can happen.

My mother taught me that everyone deserves to be treated with respect and kindness and I try to live my life that way.

Molly's email is:   molly@utahkidsfoundation.com





Nadine Stoliby Braxton

(Events Calendar)

Nadine is the grandmother of 8 year old Dakota, who is high functioning Autistic, has ODD, SPD, ADHD and some anxiety issues. She is a huge advocate for her grandson, especially at school, as this is where he had the most problems. Nadine came to Utah from Texas because of work and her daughter Jessi and Dakota lived with her in Texas so they came with her. Her mother, Lena also came to Utah from Arizona and they all live together. So, Dakota has 3 very strong and compassionate ladies in his life. Nadine works as a Prepress Technician Lead at Quad Graphics.

Nadine is Native American and a tribal member of the Choctaw Nation of Oklahoma. She loves Pow Wows and rodeo tries to get Dakota to go to these events. Dakota's passion is trains and legos, Nadine takes him to all the model train shows that are within driving distance. Dakota will stay at a train show from the time it opens until the time it closes and it doesn't matter how many times he has to look at the same thing. Nadine volunteered to be the events coordinator for Utah Kids Foundation after she joined the Facebook group. She wanted to give back to the group because there was so much information and comradery within the group. Nadine and her family live in Bountiful.

Feel free to contact her through the events@utahkidsfoundation.com email to add any events to our calendar. She also will post the event on the Utah Kids Foundation Facebook feed.

(Pictured by generation, left to right: Great Grandma Lena with Chase, Nadine, Jessi and Dakota in front.)





Kris McFadden

(Treasurer)

Kris McFadden brings over 20 years of accounting experience to the position of Treasurer. Most of this time has been with one and later two boys with special needs at home. Kris and his wife have three boys. The oldest is as "normal" as a child of his could hope to be. The younger two have a rare condition called L1 Syndrome.

Kris has had to become the health insurance expert at work and been asked to look into different healthcare plans to help his company select the best plans. He has learned that although his boys may have the same diagnosis, that they are completely unique in personality, temperament and diffabilities. And yes, Kris said "Diffabilities, we all have different abilities including our special needs kids."


Kris's email is:   kris@utahkidsfoundation.com





Tammy Will

(Director of Philanthropy)

Tammy Will is a transplant from New York and brings over 20 years of experience in start-up business and non-profit promotion and structure, grant writing, strategic planning programs, economic development, acquisitions, tourism and Native American health and education programs. Tammy owned her own businesses for over 30 yrs. She is a graduate of the State University of New York and has served on various non-profit boards and chambers. Tammy is the past president of a local New York chapter of BPW/USA. She is a member of the Lions International. She has received various awards through the years for a variety of community service and programs.

Tammy's email is:   tammy@utahkidsfoundation.com





Chelsey Stephens

(Events Manager)

Hey ya’ll, I’m obviously Chelsey! I am married to a real-life Superman, and we have 2 daughters. Currently I am a SAHM and am beyond thankful for it. Our oldest is our “neurotypical” daughter and our youngest, Norah is our medically complex kiddo. We are currently pursuing a diagnosis for her, but she is FTT with delays, hypotonic, G-Tube dependent and has dysphagia/aspiration issues. She is the most social child I have ever seen and will welcome anyone that walks by with a wave and a kiss! We have been around UKF since before our daughter was born helping with Stuff the Stocking and we can’t praise this organization enough.

I absolutely love party planning and organizing events and I am beyond excited to bring my organizational skills and willingness to serve others to help Utah Kids Foundation. I have already learned so much from so many families and am eager to continue to expand my knowledge as we navigate this new world we were catapulted into.

Chelsey's email is:   chelsey@utahkidsfoundation.com





Becky Danco

(Weber County Representative)

Hi my name is Becky and I am 33. I am a single mother to Maggie who is 9 years old. We didn’t find out she had medical issues until she was born. She was born full term but tiny she was 4lbs 8oz. When she was 2 days old she was put in the NICU. They found out she had a genetic condition and she was in mild congestive heart failure from her PDA being open. She was transferred to primary’s when she was a week old from Montana. She was in primary’s NICU for a month. During that time we found out that her genetic condition was a very rare genetic deletion. As of right now she is the only documented case. They are guessing that is the cause of all of her medical issues. I am a supply pick up and drop off location. I am so excited to help with Utah kids they have been such a support and a wealth of knowledge that it’s so great to be able to give back and help our Community out.

Becky's email is:   becky@utahkidsfoundation.com





Kimberly Butterfield

(Inventory Manager)

My name is Kimberly Butterfield, My husband Cody and I have been married since 2003 and started dating as high school sweethearts in 1998.We have a lot of fun together and share a love for everything outdoors, fishing, hunting,camping, four wheeling pretty much anything away and out in the backwoods! You could say I lack the ability to be girly! Cody and I have 4 Kids. Miley is our oldest birth daughter, she is 10 year old, she is soft hearted and full of character. She is very loving and compassionate towards people with disabilities. She will go out of her way to make sure that she makes anyone that is Differently-abled feel included and enjoy the activity. She adores dancing on her performance team it keeps her busy, she practices acrobatics, dance, ballet, tumbling, and jazz dance. She also loves Girl Scouts Harley is my spunky and wild 7 year old,our second birth daughter. she will hold her own and prove her stance any chance she gets. She is also very loving and compassionate when it comes to disabilities. She is the first person to jump to help when her Brother is having a seizure or one of them needs their G Tube changed. She is very caring and aware of their needs! She is the first one up to go fishing in the morning and loves every minute of it! She also loves dancing currently Ballet, tumbling, gymnastics, tap dance and girl scouts. Cody is 24 years old and has a sustained a tbi at a young age, he has intractable epilepsy, spastic Cerebral Palsy, g tube, Harrington Rods, Baclofen pump and a Vagal Nerve Stimulator. He is a funny close to age appropriate dude, who is pretty quick witted and has the best sense of humor! He loves movies, punny jokes, Star Wars and all things superheroes. Nickolai is 25 years old, he's my hand full. He moved in with us when he was 7 and it has been quite the adventure! He was born with Hydrops-fetalis,sports an extra chromosome for the Down Syndrome diagnosis, Autism, severe hip dislocation. Has never eaten by mouth and has a Gtube, has severe OCD,ODD self aggression/abusive behaviors. He his a feisty Hulk that keeps us laughing with his “shake a leg’ and on our toes with his 2-4 hours of sleep a night and moodiness! He loves camping and hates dirt! It's just the way it is! Our family is pretty crazy but we love it! It keeps us busy and on our toes! We face a lot of challenges but enjoy each milestone! I worked in Jordan School district for 15 year at Jordan Valley school and Kauri Sue Hamilton School and had to leave when we were struggling to find a good day program placement for my oldest son. I worked as a Physical Therapy Assistant for 12 years where i went to seating and positioning trainings along with continued education classes for wheelchair fitting, building and modifying. Along with Standers, gait trainers,swimming, sidelyers, DAFO fittings, sensory integration and all things PT/OT I miss doing the PT aspect of my job so much and the challenges that came with it! I am grateful to be able to help Utah Kids with that part! I am not great about talking about my self and sharing about my life but this is it in a nut shell! Thank you for taking the time to learn about my Crazy Village!

Kimberly's email is:   kimberly@utahkidsfoundation.com





Kathlean Hinnen

(Inventory Assistant)

Hello, my name is Kathlean. I am a mother to two beautiful boys and a wife to a wonderful man. My husband Ray and I moved to the small town of Gunnison in March of 2018 shortly after our son was born to raise our boys. It has been a whirlwind of changes and craziness but it has been worth every minute of it. My eldest son Andrew is 17. I may not have given birth to him but he is an amazing young man and I am blessed to be his mom. He has autism, cerebral palsy, microcephaly and a few others. He functions at about 18 months old. Andrew is a fun, loving, and adorable young man with a light hearted personality. He loves music and just being a kid! My son Charlie is my only birth child. He is 10 months old. He has GI issues but is a spunky young man. It's amazing how much your life changes with a baby! He absolutely loved food and eating! He is a mommy's boy but I secretly love it! As for me, I love the little things in life. I love to read, paint, crochet, go for walks, and be with family. I have an old soul and I move at my own pace. Living in a small town has been wonderful for me. It is a calm and slower pace lifestyle that keeps me happy. It also keeps my medical issues at bay as I was diagnosed with Multiple sclerosis in 2013. It has been a whirlwind of adventure and change the past few years but I wouldn't have it any other way.

Kathlean's email is:   kathlean@utahkidsfoundation.com





(Davis County Coordinator)





(Fundraising / Volunteering Coordinator)





(Eastern Utah Parent Advocate)





(Programs Manager)





The purpose of Utah Kids is to help the parents of special needs children:


Have a safe place to ask difficult questions about the care of their special needs children in a forum where they are surrounded by the parents of children just like theirs.



Exchange free medical equipment or facilitate the sale of medical equipment.  Items may be sold for your out-of-pocket expense only (you must provide proof of purchase).  All supplies should go through our foundation to ensure equitable distribution of supplies.



Share information in regards to doctors, services etc. for our children.



We do not discriminate on the level of disability;  we allow a broad spectrum of special needs to be discussed on our forum, from ADHD to Zellweggers.

At the discretion of the board, individuals who are not the parent of special needs children may be admitted.

We freely and publicly share information on doctors, therapies, spare supplies and local events that benefit our community.  We welcome all families who reside, or actively receive medical care, in the state of Utah.  Those families who no longer receive services in the state of Utah should plan to gradually phase-out their membership on Utah Kids within a period of 6 months in order to preserve the accuracy of the information provided and maintain the integrity of the community (which is strictly Utah-centric).

We hope it goes without saying; kindness and supportive words and ideas should be the rule in these forums.  You are not required to agree with everyone, but disagreements should be handled in an adult manner. Speak your thoughts about the issues. Do not attack the personl deal with the issues instead. Some basic rules to keep in mind before deciding to post:

  1. No posting of events is allowed in the forum.  They must be sent to events@utahkidsfoundation.com.  Our events coordinator will then post the event to our public events calendar and into our online forum.
  2. Any posting of needy family alerts, contests, giveaways, sales, products for sale, and posts for other people must be approved BEFORE posting them to the forum.  The reason for this is two-fold:  i)  Because we now have 501(c)3 status, we cannot endorse or promote any product or company.  ii)  Posts of this nature detract from the purpose of the forum.  Multiple posts in a row that have nothing to do with the topic being discussed, or by the same individual regarding the same item over and over only serve to clog the discussion threads.
  3. We do not allow job postings or invites to your home-based business events.  We do not want to know if the company you work for is hiring, or any other positions you know about at other companies.  Special exceptions can be made (after the board first reviews the request) for those that make products or who are licensed to provide therapies that benefit our kids within the broader circle of the special needs community.
  4. Please do not post in the forum with a sense of entitlement, expecting other members to find resources for you or do research for you that you can be doing on your own.  Most of us are happy to help you if you first demonstrate that you have attempted to find the information on your own, but perhaps still have a few gaps in your knowledge.  
  5. a) If you run out of supplies simply let us know that you have run out of the item and we will try to assist.  Most of us will bend-over-backwards to help someone in need who is genuine, kind and respectful, but we will typically not respond positively to someone who is demanding.  Please send all requests to inventory@utahkidsfoundation.com.  b) We only move items 2 times a month unless there is an urgent need. We only hold items at drop locations for 2 weeks unless otherwise arranged. There will be no refunds on items not picked-up in that time frame and they will no longer be available for you. Items requested or donated need to be picked-up or dropped-off. We do not deliver / pick-up. Make sure to arraange with your pick-up location for a time and day. If you can't pick-up at the scheduled time, give atleast 24 hours notice. Rescheduling more than 3 times may result in not being allowed supplies in the future.
  6. Members who ONLY post links to information on other websites, even if said information appears useful and relevant in regard to special needs children, but who DO NOT participate in the on-going discussions or interact with other members in a meaningful way will be monitored, then warned, then banned.  The reason for this is we want Utah Kids to remain a conversational forum.  Numerous links interrupt the free flow of information and ideas.
  7. The community of Utah Kids is structured under one umbrella:  We are all the parents of special needs children.  We encourage conversations that support both individual and group situations.  Being a special needs family can create its own exclusionary group from the public, and in recognition of this we will not endorse religious- or politically-fueled conversations or comments as those create separation from our foundation's goal of supporting all special needs families in Utah.
  8. Posts in the group forum must be for your special needs children, not for yourself or your friends and family.   If your friends live in Utah or receive services in Utah for a special needs child, the proper etiquette would be for them to join the forum and ask the question(s) for themselves on behalf of their special needs child.
  9. We consider it to be a blatant sign of disrespect to post comments that begin with phrasing like "Not sure if this post is okay, but..." or "This may violate the forums rules, but..." and then proceed to post anyway.  If you suspect that your post may violate the forum rules, send your candidate post to a member of the board for review.  The board can then review the post and help with wording or content so that your concerns may be addressed without damaging the integrity of the forum.
  10. Any and all conversation of CBD and MMJ can be taken to
    TRUCE on Facebook
    . Posts in UKF will be shut down due to the current political and controversial connections with CBD (Hemp and Marijuana) and medical marijuana, these cannot be discussed to to our 501(c)3 status.
  11. Posts with pictures of cuts / burns / rashes etc. need to state 'picture in comments'. We have members who are sensitive to pictures like this.
  12. Blocking of an admin or moderator is grounds for immediate ban from the forum. If you have problems with an admin / mod go to another one about it, but do not block us. We need to be able to communicate with all members.

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