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<div>Shortly before her second birthday, Hope was diagnosed as having a <strong>SMOC1 Related Disorder</strong>. This made her pretty unique as one of less than 10 known cases. In her 6 short years of life, she has had 9 hospitalizations and 4 surgeries. She receives medical care in 2 different states. Hope was born very small with one eye, one functioning kidney, dislocated elbows, a large hole in her heart, curved fingers, 8 beautiful toes, and a tethered spinal cord.
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<div><strong>SMOC1 Related disorders are ultra rare!</strong> Hope’s family was left with almost no resources to find help or hope for the progression of this disease. Thus, SMOC1 Foundation for Hope was born. The goal of our organization is to provide a home for families affected by SMOC1 Related Disorders, to give these families a roadmap while navigating this disease, and to push SMOC1 research forward with the end goal of improving the quality of life for patients with SMOC1 Related Disorders.
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<div><strong>We need your help!</strong> Research requires funding and our research goals for 2025 are exciting and your donation is tax deductible!
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<div>These include building animal research models and a patient registry. Please consider giving to improve the lives of children who are affected by SMOC1!
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<div>Thank you to gofundme for providing a reduced fee for us!
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<div>instead of only doctors. We found other parents who got news similar to ours and learned their kids were unicorns. We took inspiration and created SMOC1 Foundation for Hope.
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<div>Our goal is twofold. One: create a community for SMOC1 families and become a place people could turn for answers and some direction. Two: push the research spaces forward in regards to SMOC1. We want to help bring the research community together to create a clearer picture of what SMOC1 dysfunction looks like in the body and help to draw that roadmap we don't have now.
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SMOC1 Research Needs You! SMOC1 Foundation for Hope

<div>On Thursday evening, the Wittenberg's Forest Ranch home was lost in the Park Fire. The place they worked so hard to turn into a loving home to raise their three children is gone, along with most everything they own. Fortunately, Mike and Andrea and their kids- Ava, Emma James, and Benjamin, as well as their pets, were able to escape safely.
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<div>Many of us have been blessed by the Wittenberg's generosity and acts of service. <strong>As they look to the difficult task of finding housing, running a business, and helping their children navigate this enormous loss, let's help lighten their load.</strong>
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<div>This will be a long road ahead, my hope for this fundraiser is that <strong>we can provide a small amount of relief during this tumultuous time.</strong> Please donate, if you can, and more importantly, pray for their family as they recover and heal from this devastating event.
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Support the Wittenberg Family After Fire Loss

<div>Hope is a unicorn. She's one in billions. Her SMOC1 gene variant causes eye, heart, bone, and other abnormalities. What is SMOC1? This was the question Hope's parents asked upon diagnosis. Next step, of course, is research on the internet! They found medical papers naming SMOC1 but no information to help them understand. Feeling alone in the world, Dani began the daunting journey of gathering information to help her daughter.
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<div>We have all heard of Type 1 Diabetes and Breast Cancer but that was not always the case. Moms, Dads, Doctors, Scientists, and other supporters have worked tirelessly over the years to grow awareness and research for these diseases. Now there are treatment options and organizations filled with information and help for families.
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<div>This is our goal.
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<div>This is where YOU come in.
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<div>Help us raise funds to gather doctors, scientists, patients, and families. Help us bring together research, old and new, to put information into one location for easy access. Help us bring this rare disease into the research community in a big way. For Hope. For the next "Hope". For everyone.
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<div><a href="https://smoc1.org" target="_blank" rel="noreferrer noopener">SMOC1 Foundation for Hope</a>
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<div>SMOC1 Foundation for Hope was established to spur on research on this gene variant and to provide information for the families dealing with the associated diseases every day. We are currently filing for 501c3 status.
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SMOC1 Foundation for Hope: Research and Awareness

<img src="https://d2g8igdw686xgo.cloudfront.net/63548897_1645725149518370_r.jpeg" alt="63548897_1645725149518370_r.jpeg" width="100%" media_type="3" />Hi friends! Some of you know, many of you don’t, that we’ve been trying for a baby for a while now. So far, IUI (intrauterine insemination) attempts have not been successful. We are pursuing IVF (in vitro fertilization) but can’t do it without some help. We have saved a good portion of money for this journey, but with each attempt, that pot quickly dissipated. Even just sharing this page can be helpful for covering the cost of in vitro. We appreciate each and every one of you, and are truly grateful for your support. Baby Hamilton coming soon <br /><br /><span style="color:#333333;"><img src="https://d2g8igdw686xgo.cloudfront.net/63548897_1645725382739407_r.jpeg" alt="63548897_1645725382739407_r.jpeg" width="100%" media_type="3" /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/63548897_1645725415898926_r.jpeg" alt="63548897_1645725415898926_r.jpeg" width="100%" media_type="3" /><br /></span>

IVF journey to baby Hamilton

Shaunna Adler

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Shaunna Adler

Discover more people

Highlights

SMOC1 Research Needs You! SMOC1 Foundation for Hope

Support the Wittenberg Family After Fire Loss

SMOC1 Foundation for Hope: Research and Awareness

IVF journey to baby Hamilton

Activity