<h4>Why is the M-CM/MCAP Network important to us? </h4><p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">In May 2024, we officially received Elliot's diagnosis of MCAP Syndrome. Unfortunately, due to the nature of the disorder and lack of adequate research, we don't know how much this diagnosis will affect his future. Some of you have been along for the ride and some have watched on the sidelines. I'm so grateful for those of you that have been our support along the way. The medical community still is learning about this diagnosis and funding is needed to help with research. We would love for our community to help raise funds on Elliot's behalf. <p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">If you'd like to follow along with our journey, you can subscribe to my blog- Navigating the Unknown: Life of a Rare Disease Parent at the following link: <a href="https://bjacksonpmhnp.wixsite.com/navigating-the-unkno" style="text-decoration-color:currentcolor;user-select:auto;box-sizing:inherit">https://bjacksonpmhnp.wixsite.com/navigating-the-unkno</a><h4>What is M-CM / MCAP?</h4><p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">M-CM stands for macrocephaly-capillary malformation and MCAP stands for megalencephaly capillary malformation. These are two names for the same rare genetic syndrome that causes irregular growth in parts of the body and the brain. Specific effects and severity vary from person to person, but common characteristics are brain overgrowth, hypotonia (low muscle tone), and developmental delays. Many patients also have vascular birthmarks and body asymmetry.<h4>Genetic Cause</h4><p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">M-CM is caused by mutations in a gene called PIK3CA that increase the activity of the gene. In most cases, these mutations happen spontaneously after conception, so that the gene is changed in a percentage of the body's cells. There are currently no known cases of inheritance. M-CM is one of many conditions caused by changes in PIK3CA and is part of a group of conditions known as PIK3CA-related overgrowth spectrum or PROS.<h4>What Do Patients Need? </h4><p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">Because M-CM / MCAP is extremely rare (we know of under 400 patients worldwide) and very complex, there is an enormous opportunity to improve care and medical management with improved education, research, and knowledge sharing. Our work strives to drive research that is centered on patient needs to improve the lives of patients living with this condition. <h4>How We Help</h4><p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;color:rgb(42, 44, 51);font-family:&quot;Lexend Deca&quot;, sans-serif;font-size:16px;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial">The M-CM Network maintains a contact registry that is used to keep patients connected to research opportunities. We have facilitated and funded a meeting of patient advocates and clinical researchers to develop clinical management guidance. We have also funded ongoing laboratory research projects for studying M-CM affected brain cells and the potential for drug treatment of hydrocephalus in M-CM. We can do so much more with your support!

Hello <span data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip" fr-original-style style="background-color:rgb(248, 248, 255);border:1px solid rgb(191, 191, 255);border-radius:4px;color:rgb(42, 42, 196);padding:1px 8px;font-size:11px;display:inline-block;margin:0px;overflow-wrap:anywhere;user-select:none;box-sizing:inherit">First name, Thank you from the bottom of our hearts for supporting our cause. This donation greatly helps our mission. If you would like to contribute further to our cause, visit the following webpage: <a href="https://www.m-cm.net/" style="text-decoration-color:currentcolor;user-select:auto;box-sizing:inherit">https://www.m-cm.net/</a>  Brittany Jackson brittany.jensen219@gmail.com

Hello First name,
 
 Thank you from the bottom of our hearts for registering to fundraise for our cause. Your efforts will make a significant impact, and we are excited to have you as part of our fundraising team. 👏
 
 💡 Here are some tips for sharing your campaign:
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 <li>Personalize Your Story: Share why this cause is important to you. Personal stories resonate more with potential donors.</li>
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 Brittany Jackson brittany.jensen219@gmail.com

Why is the M-CM/MCAP Network important to us? <p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">In May 2024, we officially received Elliot's diagnosis of MCAP Syndrome. Unfortunately, due to the nature of the disorder and lack of adequate research, we don't know how much this diagnosis will affect his future. Some of you have been along for the ride and some have watched on the sidelines. I'm so grateful for those of you that have been our support along the way. The medical community still is learning about this diagnosis and funding is needed to help with research. We would love for our community to help raise funds on Elliot's behalf. <p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">If you'd like to follow along with our journey, you can subscribe to my blog- Navigating the Unknown: Life of a Rare Disease Parent at the following link: <a href="https://bjacksonpmhnp.wixsite.com/navigating-the-unkno">https://bjacksonpmhnp.wixsite.com/navigating-the-unkno</a>What is M-CM / MCAP?<p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">M-CM stands for macrocephaly-capillary malformation and MCAP stands for megalencephaly capillary malformation. These are two names for the same rare genetic syndrome that causes irregular growth in parts of the body and the brain. Specific effects and severity vary from person to person, but common characteristics are brain overgrowth, hypotonia (low muscle tone), and developmental delays. Many patients also have vascular birthmarks and body asymmetry.Genetic Cause<p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">M-CM is caused by mutations in a gene called PIK3CA that increase the activity of the gene. In most cases, these mutations happen spontaneously after conception, so that the gene is changed in a percentage of the body's cells. There are currently no known cases of inheritance. M-CM is one of many conditions caused by changes in PIK3CA and is part of a group of conditions known as PIK3CA-related overgrowth spectrum or PROS.What Do Patients Need? <p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">Because M-CM / MCAP is extremely rare (we know of under 400 patients worldwide) and very complex, there is an enormous opportunity to improve care and medical management with improved education, research, and knowledge sharing. Our work strives to drive research that is centered on patient needs to improve the lives of patients living with this condition. How We Help<p style="box-sizing:border-box;margin-top:0px;margin-bottom:1rem;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;max-width:100%">The M-CM Network maintains a contact registry that is used to keep patients connected to research opportunities. We have facilitated and funded a meeting of patient advocates and clinical researchers to develop clinical management guidance. We have also funded ongoing laboratory research projects for studying M-CM affected brain cells and the potential for drug treatment of hydrocephalus in M-CM. We can do so much more with your support!

Promoting knowledge, awareness and patient-centered research about macrocephaly-capillary malformation syndrome to improve the lives of patients and their families!

M Cm Network

Promoting knowledge, awareness and patient-centered research about macrocephaly-capillary malformation syndrome to improve the lives of patients and their families!

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