Your Story

Sharing your story is an important part of becoming an advocate.

Your personal connection to the disease is what will motivate decision-makers to act.  Moreover, sharing your story may inspire others experiencing similar challenges to act with you.  Join forces when possible.  A community of support will make it easier to enact change.

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Keep in mind:

  • What is your mission?
  • Who is your audience?
  • What action do you hope to see after sharing your story?

Sharing your story amongst fellow families in the disease community may look different than sharing it with legislators.  But sharing it with your community is a good place to start.  This also may be a good means of gathering a network of supporters that will back up your work.  

When you share your story with legislators, be honest.  Contrast how life would have been different for the affected individual had their condition been screened for at birth.  And include how life would have been different for you and the individual’s loved ones.  Tell them why you are passionate — why this is important to you.  Why have you elected to adopt this mission of advocating for newborn screening of this disease?

Keeping in mind your audience is also key when it comes to presenting your story.  Often, legislators will have never even heard of leukodystrophy.  That’s why it’s important to Know Your Disease.  This means being very knowledgeable about the research that is out there.  You can find some helpful publications here.  In addition to hearing your personal connection, decision-makers will want to know the data that proves newborn screening of this disease will make a real difference in people’s lives.  

And finally, be clear what action you hope to see taken as a result of this collaboration.  To your community of support, tell them how they can help influence legislators.  Provide templates to email politicians.  Link helpful organizations they can donate to.  When it comes to legislators, tell them that your leukodystrophy should be added to the state’s newborn screening panel.  And that if it had been on the panel, the loved one you’re fighting for would have had an entirely different life.

Where to start:

If you are not sure how to begin narrating your journey, it may be a good idea to start by considering these questions:

    1. What does the leukodystrophy look like? How has it affected the individual you’re connected to?
    2. What treatments are currently available?  Does earlier treatment confer better outcomes?
    3. How would newborn screening have changed the life of the patient? 
    4. How would it have changed your life?  And the lives of your loved ones?
    5. Why are you passionate about newborn screening for this disease?

These questions will help you begin to design your narrative.  You will need more information to round out your story as well as to answer questions and even correct misinformation that others present.  You are the expert on how this disease affects families.  And during your interactions with decision-makers, you will be the resident expert on how the disease affects the community at large.  Check out these three pillars of newborn screening for more information that will be helpful to know during your advocacy work.

3-Hydroxy-3-Methylglutaric Aciduria
3-Methylcrotonyl-CoA Carboxylase Deficiency
Argininosuccinic Aciduria
Beta-Ketothiolase Deficiency
Biotinidase Deficiency
Carnitine Uptake Defect
Citrullinemia, Type I
Classic Galactosemia
Classic Phenylketonuria
Congenital Adrenal Hyperplasia
Critical Congenital Heart Disease
Cystic Fibrosis
Glutaric Acidemia, Type I
Hearing loss
Holocarboxylase Synthetase Deficiency
Isovaleric Acidemia
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency
Maple Syrup Urine Disease
Medium-Chain Acyl-CoA Dehydrogenase Deficiency
Methylmalonic Acidemia (Cobalamin Disorders)
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency)
Primary Congenital Hypothyroidism
Propionic Acidemia
S, Beta-Thalassemia
S, C Disease
Severe Combined Immunodeficiency
Sickle Cell Anemia
Trifunctional Protein Deficiency
Tyrosinemia, Type I
Very Long-Chain Acyl-CoA Dehydrogenase Deficiency