Our Vision and Objectives
Vision - That standards for timeliness of Newborn Screening would be defined and regulated by the Federal Government.
- Objective - To create uniformity among the states in the United States in terms of Newborn Screening tests and timeliness.
- Why? - Today, the state that you are born in impacts what newborn disorders you are tested for, the standard for diagnosis, and how timely you are tested for the disorders.
Vision - We will find an alternative means of testing for MCADD (and other time-sensitive newborn disorders) so that families will know that their newborn is affected with the disorder before leaving the hospital or birthing facility.
- Objective - We will explore opportunities for enhancement and/or alternatives to traditional Newborn Screening for MCADD, such as point of care testing.
- Why? - Timely newborn screening is essential to save the lives of babies like Adrianna and Bryson (Click Here). Having knowledge that your newborn has MCADD allows for immediate treatment, which for a newborn means not letting him/her fast for more than three hours. Lack of timely diagnosis can lead to disability and/or death.
Recognition of MCADD
Vision - That MCADD would become a commonly known disorder.
- Objective - Our goal is to educate and raise awareness of this disorder by speaking about our personal experiences with MCADD (i.e., at state laboratories, hospitals and with providers). We will also look to educate and inform through social media and fundraising.
- Why? - MCADD is a rare disease. Not only is it rare to the general public, it is also rare to providers and practitioners. In fact, it is recommended that those living with MCADD carry, at all times, a letter from their metabolic specialist detailing treatment so that healthcare providers know how to treat the individual with MCADD quickly in the event of a metabolic crisis. We hope that accomplishing our goal of educating and raising awareness will bring peace of mind to individuals and families living with this disorder.
An MCADD Community
Vision - That we create a unified community for individuals and their family members living with MCADD.
- Objective - When searching the internet for personal experiences with MCADD, there are numerous stories out there. Our goal is to join all of these individuals together as a unified community. A unified community will: (1) Help us achieve our goals faster; (2) create accountability to stay focused on our goals; and (3) Give us encouragement when we encounter obstacles. As a unified community, we will look for opportunities to help one another. Minutes Matter will seek volunteers to meet with newly diagnosed families to share personal stories and offer words of advice and support. We’ll connect Minutes Matter members with one another for that same offer of advice and support. And together, we’ll advocate for improvements to newborn screening, in the hopes that we give future members of our community a better chance to join us.
- Why? - There’s comfort in knowing that we’re not alone. While we know and understand that experiences are unique, there is comfort in hearing of experiences of others, particularly as parents as our children go through various phases of life. We also believe that a unified voice will be heard. Most changes to newborn screening has taken place as a result of the voice of parents and advocacy groups. Let’s join together to be heard, and save lives.
Vision - That we celebrate MCADD.
- Objective - One of our objectives is that as we raise awareness of MCADD and celebrate those loved ones with MCADD, that we might also raise money to fund advancements in this area. We know and understand that funding is a major obstacle in the newborn screening arena. It is a challenge to have new tests added to the screening panel because of the money it takes to conduct the tests. Therefore, little is left to conduct research and make advancements specific to MCADD. Thankfully MCADD is now tested for in every state in the United States. The funding challenge arises with respect to timeliness. We need funds to help advance efforts with technology to make it possible to test more timely for MCADD. We also need funds for research to explore the possibility of finding a cure for MCADD. Can you imagine a life where you no longer have to watch the clock and wake up to eat while you’re sick?
- Why? - Foremost, those with MCADD deserve to be celebrated. While MCADDers are not having to take handfuls of pills each day, or undergo treatments, they do have to make accommodations to their lifestyle. They can adapt and adjust, but MCADD is always present. There is a constant concern (particularly for us as parents of a child with MCADD) that their sugar drops, a metabolic crisis ensues, and there is permanent damage to organs or even worse, death. Let’s celebrate by taking the opportunity to raise funds with the hopes of making advancements in this field, relieving the anxieties and constant accommodations that accompany this disorder, and impacting and saving lives.