Reflecting Back and Looking Ahead– Being FASD Aware is a Year-Round Endeavor

Reflecting Back and Looking Ahead– Being FASD Aware is a Year-Round Endeavor

At the beginning of September, we called on you to Show Your Respect This FASD Awareness Month. As the month comes to a close, we wanted to take a moment to reflect on all of the efforts that were made to spread awareness this month and look ahead to all that is still needed to work toward prevention of Fetal Alcohol Spectrum Disorders (FASDs) and appropriate support for individuals and families in Colorado who are impacted.

 

A Month in Review: FASD Awareness Month 2022

Illuminate kicked the month off by focusing on FASD during our quarterly Luminary Lift Up session. Sharon Langendoerfer, a member of the SuPPoRT Colorado FASD Awareness Work Group and a retired neonatologist and pediatrician, helped attendees to become FASD aware with a presentation on the basics of FASD. The Work Group’s Chair and fierce FASD advocate, Marilyn Fausset, shared highlights about what the work group has accomplished – including the development of a list of Colorado Providers Equipped to Diagnose Under the FASD Umbrella– and what they are working toward moving forward. 

Susan Shepard Carlson, founder of Proof Alliance and FASD United board member, shared an overview of critical pending federal legislation known as ‘The FASD Respect Act’, which would reauthorize funding for prevention, screening, identification, research, and FASD-informed services, and Illuminate staff member, Cassie Davis, shared what the legislation would mean for Colorado and how to get involved in advocating for it.

Illuminate was thrilled to be able to put a major opportunity to advocate for the FASD Respect Act into action during the FASD United Affiliate Summit in Washington D.C. by meeting with the offices of Colorado representatives Diana DeGette and Joe Neguse and Colorado Senator John Hickenlooper to educate them about FASD and share information about and request their support of the pending legislation. 

Throughout the month, Illuminate was also proud to sponsor and participate in Run FASD, a virtual 5k to raise awareness and funds for FASD.

And it’s not just our organization who knows how important it is to be FASD aware, work to prevent FASDs from occurring, and support those who are impacted by it. Governor Jared Polis signed a proclamation in recognition of FASD Awareness Day, which reaffirms that “the health and well-being of the people of Colorado are enhanced by efforts to educate about, prevent, and support those impacted by FASDs”. 

The Work Does Not End Here

While the official FASD Awareness Month is a wonderful time to place a particular emphasis on FASD, creating awareness and advocating for the prevention of and appropriate support for those impacted by FASD is a year-round endeavor. 

Here are just a few of the ways that we need you to continue to spread awareness and advocate beyond September: 

We are so grateful to all of our partners across Colorado and nationwide who tirelessly advocate for visibility and support for the FASD community, and we look forward to continuing to do so together!

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Show Your Respect This FASD Awareness Month

Show Your Respect This FASD Awareness Month

Each September, we recognize Fetal Alcohol Spectrum Disorder (FASD) Awareness Month to bring awareness to the many individuals and families who are impacted by the effects of prenatal exposure to alcohol in Colorado and across the United States.

What is Fetal Alcohol Spectrum Disorder (FASD)? 

FASD, an umbrella term used to describe a range of effects that can occur in a fetus exposed to alcohol before birth, is the most commonly known cause of developmental disabilities in the United States.

While the exact number of people who have FASDs is unknown, it is estimated that up to 1 in 20 U.S. school children may have an FASD, with 1 in 7 pregnancies being alcohol-exposed. In Colorado in particular, an estimated 15.4% of pregnant individuals in our state drank alcohol during the last 3 months of their pregnancy, according to the most recently available Pregnancy Risk Assessment Monitoring System (PRAMS) data.

Learn More About Alcohol and Pregnancy

Have questions about the relationship between alcohol, pregnancy and FASD? Learn more on our Alcohol & Pregnancy topic page.

When children, adults, and families impacted by FASD receive appropriate diagnoses, supports, and services, secondary impacts of FASDsuch as dropping out of school, getting into trouble with the law, and substance usecan be prevented, and impacted individuals and families can thrive.

While we know the importance of providing appropriate services for pregnant people impacted by alcohol use and families who are impacted by FASD, significant and concerning gaps in FASD-related preventive, diagnostic and clinical resources are common in Colorado and throughout the United States. 

The Time is Now!

This September, we have a particularly momentous opportunity to build on and improve our nation and the state of Colorado’s efforts to prevent alcohol use during pregnancy, support those who are struggling with alcohol use during the perinatal period, and provide concrete supports to individuals and families impacted by FASD. 

The “FASD Respect Act” (S. 2238 and H.R. 4151), legislation currently being considered at the federal level, would reauthorize vital funding for prevention, screening, identification, research, and FASD-informed services. 

It reauthorizes and strengthens existing federal FASD programs, replaces the defunct National FAS Taskforce with a National Advisory Council on FASD, and establishes a FASD Center of Excellence as the go-to entity for state, tribal and local governments and non-governmental stakeholders seeking to develop or improve best practices for prevention, diagnosis, and intervention services. Find more information about the proposed legislation here. 

How Can I Show My Respect for Coloradans Impacted by FASD?

Whether you are an individual Coloradan or a Colorado organization that cares about ensuring that those who are using alcohol during pregnancy and those impacted by FASDs are treated with the respect they deserve and receive the support that they need, we need YOU to help ensure that Congress passes this vital legislation. 

Advocacy Opportunities

  • To advocate for the passage of the FASD Respect Act on behalf of an organization, sign on to the Letter of Support.
  • To advocate for the passage of the FASD Respect Act as an individual, reach out to Colorado’s senators and the representative for your district to schedule a meeting.

Need help? Find support with scheduling and hosting a meeting with your legislator here and/or by reaching out to Cassie Davis at cdavis@illuminatecolorado.org.

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Me:  “Will you please go downstairs and turn off the lights you left on in the bathroom, your room, and the den?!”  My Son:  “Why?  Maybe later.” Me:  “Well then let me rephrase it. If you don’t turn off the lights now, you’ll lose your device for the day! It’s not...

It Can’t Just Be Me

It Can’t Just Be Me

Me:  “Will you please go downstairs and turn off the lights you left on in the bathroom, your room, and the den?!” 

My Son:  “Why?  Maybe later.”

Me:  “Well then let me rephrase it. If you don’t turn off the lights now, you’ll lose your device for the day! It’s not like I haven’t asked you to turn them off hundreds of times before. If you would do it in the first place I wouldn’t have to ask you!”

Welcome to an exchange between me and my son, more times than I’d care to admit, in telling him what I want him to do. Why this particular exchange?  Honestly, to save on the electricity bill.  Why in this tone?  Because of how frequently this conversation happens. More on this later.

Can I get an Amen?!  

On the night of my wedding, my brother advised me to, “not sweat the small stuff” in my marriage.  Of course, my brother wasn’t married at the time and that was over 20 years ago. Recently, I’ve heard this said multiple times in various conversations or digital platforms. This can’t be a coincidence, right? I’ve also heard it said in the following way, “what hill are you willing to die on?”  I can tell you this, when I hear these phrases being used it’s easy to receive, but not so easy to act upon. Especially, in the heat of the moment. Can I get an Amen?!  

I am a father who did, self-admittedly, a solid job of raising my children when they were infants, toddlers, and even somewhat into middle childhood. But, it was right about that time when middle school entered the picture that I started to become more of a parental tyrant. My biggest crusade has been to make sure the house is in order, but this has come with a price as it relates to the relationships I’ve had with my children.  

If you know middle-schoolers, this is about the time when they can become a BIT of a challenge in several ways, at least for me. It’s a particular attitude that they bring to the table that can press all of my buttons, including the ones I didn’t even know I had.  

I am a father who did, self-admittedly, a solid job of raising my children when they were infants, toddlers, and even somewhat into middle childhood.

But, it was right about that time when middle school entered the picture that I started to become more of a parental tyrant.

Anonymous

Can I get a Hallelujah?!  

My oldest son is on the FASD spectrum. I’ve put in hundreds of hours educating myself on FASD, after getting a diagnosis, and I can tell you several reasons why a child on the spectrum acts the way they do, and I can give you several ways how to properly respond. Here’s the challenge though, walking the walk is much easier than talking the talk. Can I get a Hallelujah?!  

To my credit, I’ve made some positive strides in parenting my son. Besides the consistency of my mindfulness practice, both he and I see therapists, and his therapist recently reported that he currently feels better about our relationship. Yes sir! I’d like to think it’s because I’m learning how to control ‘me’ rather than being so focused and frustrated on controlling my son.  Don’t get me wrong. I won’t let my son walk all over me, but there comes a time when I need to understand the importance of maintaining a loving relationship with him that will last for the rest of our lives. Nitpicking him in so many ways is not creating that road I want us to travel together. 

Don’t get me wrong. I won’t let my son walk all over me, but there comes a time when I need to understand the importance of maintaining a loving relationship with him that will last for the rest of our lives.

Anonymous

But, It’s Up to Me

One of the greatest lessons I’ve learned with FASD is that my son’s actions are due to trauma to the brain, not an intentional act of defiance. But many times, that’s the way I take it, like a personal attack on my leadership. Honestly, in our family of five my son probably has the most tender heart of us all. The last thing he wants to do is hurt me or any other member of our family, we’ll maybe his younger brother just a little- just kidding).

When he doesn’t turn off the lights it’s not to annoy me, but that’s the way I take it. Instead, it’s up to me how I control my tone when I speak to him, and it’s up to me to come up with an idea that might work out better for him to turn them off more frequently than he does, including brainstorming together. To his credit, it’s not just me having to do all the legwork. As he is getting older, he is playing more of a central role in figuring out ways to be at his best in our family dynamic.   

Now, I’m not saying I’ve made it to the mountaintop yet as it relates to being a dad. Matter of fact, I still could be in base camp. But I can honestly say I’m taking steps in the right direction because my son is well worth it.

About the Author

About the Author

Anonymous

This article was written by a father of  four beautiful children, three of whom have been adopted.  He is committed to sharing the experiences of his family impacted by FASD, anonymously, through the Becoming FASD Aware blog series to strengthen families and build awareness.

This photo was taken by the author’s son. while they were on a walk together. 

Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Our collaborative effort has a new name! Moving forward, the groups that were previously referred to as the Colorado Substance Exposed Newborns (SEN) Steering Committee, Family Advisory Board, and associated Work/Advisory Groups will be collectively known as Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado (SuPPoRT Colorado). SuPPoRT Colorado will continue to work toward the same vision of a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive, under a name that more accurately reflects our mission, values, and the work we do.

Aligning Our Name with Our Mission and Values

Hear from Family Advisory Board and Steering Committee members in their own words why they chose to make this name change:

The name change is important because it has a supportive person center description. I think it is important to keep the recovery from SUD during pregnancy in the title too so that it is also focused on the solution.”

Ashley Miller

Family Advisory Board member

“The new name, SuPPoRT Colorado: Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado, is now inclusive of those who are affected by perinatal substance use throughout their entire lives. Effects of fetal alcohol exposure often require lifelong supports.”

Marilyn Fausset

Parent advocate, FASD Work Group Co-chair & Steering Committee member

“I really appreciate that the new name “SuPPoRT Colorado” shifts the focus from the newborn’s exposure to the support provided to both the newborn and the parent(s) related to prevention, treatment and recovery.”

Deborah Monaghan, MD, MSPH

Medical Director at Office of Children, Youth and Families-CDHS, Steering Committee member

“The name change reflects our commitment to learning with and from families, providers, researchers, and advocates. The new name better embraces our commitment to data-informed action that is family-led and community-based.”

Courtney L. Everson, PhD

Senior Researcher/Project Director at Colorado Evaluation and Action Lab, Data & Research Advisory Group Co-chair & Steering Committee member

“As our work has continued to evolve over the last 14 years, it only seems fitting that our language evolves too. Our new name “SuPPoRT Colorado” better reflects our continued commitment to families across the lifespan.”

Jade Woodard, MPA

Executive Director of Illuminate Colorado, founding Steering Committee Co-chair

“Rising to meet the current needs and opportunities in our state has been core to our collaborative work since the very beginning, and I’m looking forward to the impact we’ll have in this next phase as “SuPPoRT Colorado.”

Kathi Wells, MD, FAAP

Executive Director of the Kempe Center for the Prevention and Treatment of Child Abuse & Neglect, founding Steering Committee Co-chair

The Steering Committee was originally established in 2008 and is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force. In 2019, the Family Advisory Board (FAB) to the Steering Committee was formed in order to elevate the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy. A reflection of the shared leadership of the Steering Committee and FAB, changing our initiative’s name to  SuPPoRT Colorado marks an exciting new chapter in our ongoing collaborative efforts to identify and implement strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.  

Beginning in April of 2021, the Steering Committee and FAB began a process to revisit our language and explore a name change to better align our name with our shared mission and values. Over the last year, the FAB and Steering Committee engaged in a process to identify ideas and ultimately choose our new name. Along the way, small ad-hoc groups of Steering Committee and Family Advisory Board members led the thinking with multiple opportunities for members across the effort to weigh in. We’re so grateful and excited to officially launch our new name and logo that was crafted with the input of so many dedicated partners.

Visit the SuPPoRT Colorado webpage to learn more about our history, vision, and mission,  click here to learn more about the current work, and sign up to join the effort here!

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Five Minutes With My Congressman

Five Minutes With My Congressman

Recently, I had a chance to talk with an aide from the 4th district represented by Congressman Ken Buck about the FASD Respect Act (H.R. 4151 and S.2238).  This piece of legislation could change my family’s life and potentially prevent hundreds of thousands of families from having to follow in our footsteps. 

With no more than five minutes to plead my case, I initially thought of giving the Congressman a snapshot of our family’s life and all the ways exposure to alcohol before birth  has negatively impacted our son, now diagnosed with Fetal Alcohol Spectrum Disorder (FASD). But, I decided this wasn’t the direction I wanted to go. It sounded too much like a list of complaints, and I didn’t want to sound like a whiner because my son is a loving, good-humored, kind-natured, individual full of potential and resilience. Instead, I made a convincing statement of truth that, I hope, left an indelible impression to help convince our Congressman to co-sponsor  the FASD Respect Act, authorizing $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.

I used my five minutes to explain what the FASD Respect Act would mean to our family, the multitudes of families who have loved ones diagnosed with FASD and the many, many people in this country that don’t even realize that FASD exists. As it stands, FASD is a national epidemic of catastrophic proportions. One that few seem to be aware of. This needs to change. It is estimated that up to 1 in 20 U.S. school aged children may have an FASD. It’s 100% preventable and caused when a fetus is exposed to alcohol before birth. You may not realize this, but alcohol is the leading cause of preventable brain injuries.   

We did not find out our son had FASD until he turned 14. That is an injustice to him, more than anyone. We should have known about this the day we brought him home, through foster care, but so many people were (and still are) completely unaware of what FASD is – including the medical field! This means even more people in the general public are unaware and families who have adopted children are particularly unaware. 

 

Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.

 

PHOTO CREDIT: This photo was taken by the author’s son while they were on a walk together.

We adopted our son, who has FASD, when he was only a few months old.  Symptoms were not easy to detect at this age and he was meeting most of his developmental milestones.  What would have been helpful was knowing that his mother was drinking alcohol when he was in utero. This is another major issue with FASD.  What issue is that you may ask? Getting women to actually share that they drank while pregnant for fear of public ridicule.  We, as a society, must not hold judgment over women who have done this.  Rather, they should be supported in what to do next.  Don’t stigmatize another human being when there are many areas that each of us can grow in and learn from about others and ourselves.

Symptoms in our son really started showing up when he was a little bit older in his infancy, mostly in the form of sensory processing disorder.  He was hyper-sensitive to certain sounds, certain bodily feelings and certain textures and tastes that caused him to become extremely agitated.  He would have complete meltdowns if the wind was too strong.  Little did we know that these were the beginning signs of FASD.  

As he has gotten older he’s shown even more significant signs.  These symptoms have included problem-solving skills (specifically math), memory issues (doesn’t remember something I literally told him 10 minutes before), ability to remain attentive (Over the Hedge- Squirrel!), difficulty in maintaining friendships (he has difficulty associating with his peers), and understanding consequences (I’ve tried every reward/consequence strategy in the book, to no avail).  You might be thinking, “This is just how teenagers are!”  I assure you, this is only the tip of the iceberg.  Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.  

Thankfully, information about FASD is becoming more readily available, but not nearly enough. The FASD Respect Act can rapidly accelerate the prevention and the education of the masses. If we had only known about our son’s FASD earlier we would have sought specific treatments recommended by professionals who knew what needed to be done once the diagnosis was made.  We informed our son’s pediatrician as well as others including the foster care system, various medical practitioners, therapists, psychologists, psychiatrists and school systems throughout the years about what we were experiencing.  Not one of them ever mentioned FASD as a cause. 

Still, it is the season of gratitude and I’m thankful that our son has his FASD diagnosis, and I’m thankful that I was heard by the Congressman’s office. I hear stories on shows like The FASD Success Show and read stories of adults who have come to this diagnosis later in life struggling to live independently, unable to hold down a job, or even getting into trouble with the law. These struggles later in life for families unaware of FASD in their lives will be so much more costly than not acting right now. The more we know the more we can act. The more we can act, the more we can bring about change. As much hurt, anger and sadness that FASD has caused our family, it has also brought out an absolute determination to bring about change; and given me an opportunity to connect with a “united front” of parents, adult survivors and organizations, like FASD United and the Colorado Chapter of FASD United – Illuminate Colorado, fighting for resources needed to increase education and prevention

We believe our son will continue to positively contribute to the world around him, but we also know he and every other individual with FASD can be much better represented and much better served if the FASD Respect Act is passed in the House and Senate.  

Our History Together

In 2017, the Colorado Chapter of NOFAS (now called FASD United) was among the four independent nonprofit organizations in Colorado that consolidated to leverage resources and increase capacity to more effectively prevent child maltreatment in Colorado. Since then, we’ve grown exponentially in service of our mission to strengthen families, organizations and communities to prevent child maltreatment.

LEARN MORE   

About the Author

This article was written by a father of  four beautiful children, three of whom have been adopted.  He is committed to sharing the experiences of his family impacted by FASD, anonymously, through the Becoming FASD Aware blog series to strengthen families and build awareness. 

It’s About Respect: Building the Foundation for Change this FASD Awareness Month

It’s About Respect: Building the Foundation for Change this FASD Awareness Month

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month. As the Colorado affiliate of the National Organization on Fetal Alcohol Syndrome (NOFAS), our organization is raising awareness all month long to help more professionals, parents and caregivers identify FASD and build Colorado’s statewide capacity to support impacted families. To that end, we need to shine a light on the opportunity before Congress to support the FASD Respect Act right now. 

The federal bipartisan, bicameral Advancing FASD Research, Services, and Prevention Act (S. 2238 and H.R. 4151), known as the FASD Respect Act, introduced this year would authorize $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.

Most importantly, the bill would create a structure for the development of well-informed public policy on FASD and would provide a clear, ongoing societal commitment to advancing research and ensuring essential services for persons with FASD and their caregivers.

FASD is a term used to describe a range of effects that can occur in a person exposed to alcohol before birth. Recent research estimates that up to 1 in 20 school-aged children in the United States may have an FASD.

People living with an FASD can reach 100% of their potential with early interventions and support from the community. Identification of an FASD—along with appropriate supports and services—can prevent secondary impacts like dropping out of school, getting into trouble with the law and alcohol and substance use. As Marilyn, a mother committed to sharing the experiences of her family impacted by FASD through story-telling emphasized the importance of a diagnosis in her most recent Becoming FASD Aware blog, “an evaluation from an FASD-aware neuropsychologist and the resulting report, with a fetal alcohol syndrome (FAS) diagnosis, helped me explain my son’s behaviors—like can’t vs. won’t. . . I now understand his behaviors in an informed light.” 

However, alarming gaps in FASD-related diagnostic and clinical resources are common throughout the United States. In addition, though many states and local communities have programs and policies to help support FASD prevention, FASD-informed intervention practices and services are limited in most systems of care around the country, and the United States itself lacks a national agenda to unite government efforts towards a common goal. 

Learn More About Alcohol & Pregnancy

Alcohol is the leading cause of preventable brain injury. No amount of alcohol is safe during pregnancy.

A

Find Support

  • Need a list of Colorado Providers knowledgeable about Fetal Alcohol Spectrum Disorders and able to diagnose?

  • Want to connect with other parents and caregivers impacted by FASD?

  • Can’t find local services or a determination of eligibility?

The FASD Respect Act lays the foundation to construct a national agenda to enhance:

    • Programs and Funding for FASD Research
    • Prevention, Screening and Identification Efforts
    • FASD-Informed Services

Key Provisions of the FASD Respect Act

The bill’s key provisions would:

    • reauthorize and strengthen existing federal FASD programs, including the Interagency Coordinating Committee on FASD; 
    • replace the defunct National FAS Taskforce with a National Advisory Council on FASD; 
    • establish new FASD programs on Building State and Tribal FASD Systems, Community Partnerships, Best Practices and Models of Care, Transitional Services and Demonstration FASD-informed Services for Individuals with FASD; 
    • provide funding to the Departments of Education and Justice for FASD education awareness and training; and, 
    • establish a FASD Center of Excellence as the go-to entity for State, Tribal and local governments and non-governmental stakeholders seeking to develop new or improve existing best practices for FASD prevention, screening and identification, diagnosis and FASD-informed intervention programs and services.

Together, we can ensure Colorado is equipped to support families impacted by FASD and prevent even more Coloradans from being impacted in the future. This FASD Awareness Month, join us in advocating for the passage of the FASD Respect Act to help develop the infrastructure to support Colorado families for years to come.

Participate in a virtual meeting with your member of the U.S. House of Representatives.

Congressional Representatives want to hear from you about why particular subjects/pieces of legislation are important to you. Individuals with lived and/or professional experience related to FASD are uniquely positioned to help their representatives learn about FASD and how the FASD Respect Act would improve the lives of impacted families in Colorado.

We are here to help! Illuminate Colorado and NOFAS are here to support you. If you would like to participate in a meeting with your representative, reach out to Cassie Davis and let us know who your representative is, and we will provide you with everything you need to schedule and host a meeting. 

Not sure who your representative is? Find out here.

**We are particularly in need of constituents of District 1 (Representative Diana DeGette), District 3 (Representative Lauren Boebert), District 6 (Representative Jason Crow), and District 7 (Representative Ed Perlmutter) to schedule and participate in meetings.**

    Ask an organization to sign on to the letter of support for the FASD Respect Act.

    Whether its an organization you work for or are involved with, or a business, agency, non-profit or other organization that would support or benefit from the passage of The FASD Respect Act, ask them to sign this letter of support.

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