National Organization on Fetal Alcohol Syndrome https://www.nofas.org The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community Fri, 22 Sep 2017 19:56:16 +0000 en-US hourly 1 Helen Simpson https://www.nofas.org/2017/09/22/helen-simpson/ Fri, 22 Sep 2017 19:45:01 +0000 https://www.nofas.org/?p=8520 read more →]]> Helen Simpson is a 28 year old FASD advocate living in Portland, Oregon with her husband and furbaby. She loves reading, writing, and talking with others. Her passion is to help people. In her blog, “Love Me Enough. Faces of Fetal Alcohol.” Helen combines her talents, passion, and diagnosis to create a positive view on FASD. She currently works for a Premiere Google Partner in Client Services and billing. 

This interview was conducted on September 9th, 2017.

Cameron Koob: I wanted to start by asking you, since it is [FASD Awareness Day], what does advocacy mean to you?

Helen Simpson: It’s a positive thing, there’s so many struggles you go through before you even have your diagnosis of FASD, before that moment, through your whole life you’re gonna’ struggle with all the effects you have from that, so FASD Day is a way to show that your life is more than your diagnosis, it’s way more than that, you can make something positive out of something that very much so negatively affected your life. It’s a way you can thank the people around you that have been such a big support group, that have helped you through those moments. It’s just a way for you to bring awareness and hopefully stop women who are going to become pregnant or are pregnant from drinking.

CK: Thank you for devoting yourself to this cause. Do you think you could talk a bit more about when and how you were diagnosed?

HS: Absolutely- I was adopted when I was about 6 months old. My parents knew a little bit of background, that I was born addicted to heroin and cocaine and I had many other birth siblings that my parents knew had suffered from my mother drinking during the pregnancy. So they had a little background about it beforehand, [but] they didn’t know exactly how it was going to affect me. I didn’t speak for a long time, I had problems with speech, my Mom had me in speech therapy, that was a big part of it. I cried a lot as a child, muscle pains, what have you.

I was 11 years old when I actually got my diagnosis, I was attending a Catholic school and other people were really the ones that realized it. People around me saw the tremors, I felt it but I thought it was nerves, maybe. It was definitely affecting my day to day life, I was very self conscious about it. I had already had a therapist to work through issues, they thought that I was bipolar, they had given me that diagnosis, ADHD, they gave me that diagnosis. So I was already on medications trying to conquer that part of it. So we went to a doctor, my psychologist suggested that we go to a doctor and see what else is going on and that’s when they gave me the diagnosis that it was tremors from FAE, that’s Fetal Alcohol Effect. They didn’t think it was quite to the point where it’s Fetal Alcohol Syndrome (FAS) but they saw some aspects of it from my nervous system.

At that point, that kind of made me feel a lot better. I felt different the whole time, my whole life I’d felt different than other people, and that’s something I’d really struggled with, my self esteem, and also why was I not good enough, that my birth mom had to do all this stuff, also plays a big role in that. Once the diagnosis came we started medications to try to control the tremors, I started at 10 mg of Propanolol and I ended up at 160 because the tremors were that bad, but you know through medication and therapy and support, it definitely helped.

CK: You’re incredibly articulate now too- you mentioned speech class helped you, was there anything in particular that worked for you? How did you come around to sharing your story?

HS: You know, I was so young I don’t really remember [speech therapy] I have to slow down and really think about my words because in the moment I’ll mess up words a lot because I’m overly excited or anxious, words just come out a jumble, writing’s always been a lot easier.

What really made me want to become an advocate is in junior high school I started talking to one of my birth sisters that’s a year younger than me, Gabriella, and our stories were very similar. She had effects, she was diagnosed bipolar, she was drug-addicted at birth to methamphetamine, and I felt like I was supposed to do something really great with this, because she really struggles a lot more than I do. I also have another birth sister, Carmen, and the effects that it’s had on her- and I don’t want to say I’m doing better by any means, but the effects that it’s had on all of us have affected us differently, and I thought “Okay, I’m doing pretty good in life, I’m doing pretty good, I’ve got a good handle on this, but I need to do something about it.” Because when you’re a kid it’s a lot harder to deal with- it’s already sucky to be a teenager- and you throw [FASD] into the mix and it’s just makes it hell, I mean high school and middle school were hell, you couldn’t pay me a million dollars to ever go back to those days.

I needed to do something positive, and I went to college right out of high school, and this was the defining moment- I had just graduated high school early, I was 17 years old, I wanted to be an English teacher, and so I went to Harford Community College in Maryland. So I was in my English Class where I had an incredible teacher, Miss Hutton, and I went to my speech class – that was really hard. Speech class was so difficult because A) I’ve already tried to conquer the speech thing and B) I’m nervous you have to be in front of this whole classroom talking.

Our first speech was an informative speech, so we could choose anything we wanted to talk about that we informative, so I decided to talk about Fetal Alcohol Syndrome. I practiced and I practiced, and I cried in front of my family every time I tried to read it because it really impacted me. After I gave the speech in front of my class, my professor, Mrs. Hart, she says “Listen, I just want to let you know that your speech really touched me, I don’t know if you know this but, my niece has Fetal Alcohol Syndrome.” It turned out her sister in-law was my professor Mrs. Hutton, and she had adopted a child with special needs who has Fetal Alcohol Syndrome. So my speech professor said “You’re doing really great, I’ve never met anyone with FAS who is doing this well, and you really gave me hope.” And she was so touched by this, and I had never met anybody else with Fetal Alcohol Syndrome, maybe I had, but it’s not something anyone is ever open about. It’s not like you meet somebody going down the street and you say “Hey I got Fetal Alcohol Syndrome” – that’s really not how it goes.

I was really blown away by that- I’ve always been a writer so I talked to Professor Hutton and told her that Professor Hart informed me she had a daughter with special needs, and I told her that I had FAE, and that I think it’s amazing she adopted this girl and is fighting so hard for her, because when people fight for you, it makes an incredible difference. Long story short, they just really filled my heart with hope and made me feel like I could make a difference, since I had an impact on their lives. I started to write a book about Fetal Alcohol Syndrome called Shameless and my Education Professor really worked with me on it, really cared about how it was going along, and the story I had to tell. I had an article written about me at that college about how I wanted to be an advocate, and that really resonated with me. I thought this is what I am supposed to do, I want to make a difference in people’s lives, and if this is the way I’m going to do it, then yes, absolutely.

CK: That’s wonderful, and you took all of this in stride and made it something you’re passionate about. That’s impressive- do you attribute your vastly positive experience overcoming adversity to your upbringing at all?

HS: 100 percent. My parents are absolutely amazing. My dad is a retired minister, my mom worked a lot in the mental health area and wanted to be a nurse. They’ve adopted 6 girls in total and they have done everything possible for their children. A lot of my siblings had many issues growing up, and there’s nothing that my parents didn’t do. They sacrificed their whole lives to make sure that their children know they’re loved, have had all their needs met, and having said that, our needs go far beyond any “normal” child- we’re talking therapy sessions for all of us, doctor’s appointments. My mom was so busy doing all of this stuff. They really did give their life to do that. Had I not had parents so willing to really make sure that I was okay , I think my outlook would be very different.

CK: Do you have any advice for parents or relatives who recently came into a position where they are caring for a child suffering from prenatal alcohol exposure? Anything you wish more people would know?

HS: There are moments where you’re going to be really frustrated, as a teacher or a parent, because your child will be hard to deal with at times, but at the end of the day just keep in mind that this child so desperately wants to be accepted by other people, and this child is going through a million things in their own mind that they’re not good enough, that they’re different, that they just want to make their parents proud. They’re already fighting a million battles in their own head, and I know it can be frustrating, but just don’t give up on your child. Every day let your child know they’re loved at the end of the day, after an argument or whatever, at the end of the day just regroup and remember that your child is doing the best that they can do at that moment, whether you see it or not.

CK: Thank you for that. Would you be able to talk a bit about your job, and if your life with FASD has affected it at all?

HS: Like I said, I still shake, even with medication I shake a lot, so I’m really self conscious being in front of other people. I have really bad social anxiety so being in front of people period is just a hoot and a half I guess. I do customer service, and it can be really frustrating. I had one customer tell me “Are you deaf and dumb? Why do you talk like that?” because I was getting really worked up and my words weren’t coming out necessarily the greatest, and I replied

“I have a problem speaking” and she responded

“Yeah, whatever.”

But you’ve got to put yourself out there, you always need to set better goals for yourself, see if you can reach those. I really love my job, my bosses are incredible and my peers are amazing, really supportive of my blog, of everything I do and who I am as a person. It can be demanding, but you’ve got to put yourself out there and prove that you can do it, and I’m really blessed that my coworkers and everybody have been so supportive.

CK: Thank you so much for sharing your story!

HS: Thank you!

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NOFAS Statement on Media Coverage of BMJ Study on Light Drinking https://www.nofas.org/2017/09/18/nofas-statement-on-media-coverage-of-bmj-study-on-light-drinking/ Mon, 18 Sep 2017 16:59:43 +0000 https://www.nofas.org/?p=8487 read more →]]> The National Organization on Fetal Alcohol Syndrome (NOFAS) is disappointed by the highly misleading, irresponsible, and downright false headlines and articles in some of the media coverage of a research study published this month in BMJ Open titled “Low alcohol consumption and pregnancy and childhood outcomes: time to change guidelines indicating apparently ‘safe’ levels of alcohol during pregnancy? A systematic review and meta-analyses”

The study found “poor quality of evidence” regarding the effects of light drinking during pregnancy, calling the evidence “sparse.” NOFAS understands this as an urgent call for more resources and attention to be devoted to the examination of the effects of low alcohol consumption on pregnancy, not evidence of a safe level of alcohol during pregnancy.

The study, “systematically reviewed data from a wide range of high quality observational studies.” The researchers assessed the impact of light drinking, “compared with no alcohol at all.” The study looked only at research into drinking at or below the level of four units of alcohol per week (≤32 g), which in practice is the equivalent of up to two typical-size glasses of beer or wine per week.

What the study did NOT find is that light drinking during pregnancy is safe. In fact, the study “found some evidence that women who reported drinking even this small amount of alcohol… were 8% more likely to deliver a baby that is small for its gestational age” and that light drinking “was associated with a 10% increased risk of preterm birth.” NOFAS doubts that many expectant mothers would consider these risks to be trivial.

However, many news articles mischaracterized the research as somehow proving that light drinking during pregnancy is completely safe. Here are just a few examples:

  • “Light drinking ‘does no harm in pregnancy” – The Times of London
  • “Light drinking during pregnancy does not harm unborn baby, study finds” – The Independent
  • “Pregnant mothers can drink 4 units of alcohol a week without putting their unborn baby at considerable risk, according to a new study” – Business Insider

The study confirmed that no research has found a completely safe amount of alcohol consumption while pregnant. There is also no known safe time to consume alcohol during pregnancy or safe type of alcohol. That is the conclusion of the CDC, NIH, the U.S. Surgeon General, and countless health organizations including AAP.

To set the record straight, several researchers associated with the study have directly refuted some of the inaccuracies in the media coverage. Two of the study’s authors wrote an article titled “Health risks of light drinking in pregnancy confirms that abstention is the safest approach.” The research institute that funded the BMJ –published study, and with which a majority of the study’s authors are formally affiliated, Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West), tweeted this correction:

 

In terms of public health messaging the study finds that, “guidance could advise abstention as a precautionary principle but should explain the paucity of evidence,” and that “explaining that ‘absence of evidence is not evidence of absence’, appears warranted.” Some of the study’s authors tweeted, “It’s better to abstain from #alcohol during #pregnancy, our researchers concluded, though evidence is lacking.” It is outrageous that so much of the media coverage overlooks these very important points.

The timing for inaccurate media coverage about alcohol and pregnancy is unfortunate, but it is also an opportunity to disseminate the facts. September is Fetal Alcohol Spectrum Disorders (FASD) Awareness Month, and NOFAS has been working with many health agencies and organizations to get the word out about the risks of alcohol use during pregnancy, the importance of helping pregnant women who can’t stop drinking to get into recovery, and the need for more services, treatments, and supports for children and adults living with FASD.

NOFAS commends the media that have accurately covered the study, such as the following:

  • “Is One Drink OK For Pregnant Women? Around The Globe, The Answer Is No” – NPR
  • “There Is No Proven Safe Amount Of Alcohol In Pregnancy. No Alcohol, No Risk” – Huffington Post
  • Can you drink while pregnant? Even light drinking can cause problems” – Newsweek

NOFAS is also heartened that many are speaking out, and we join CLAHRC West in passing on important messages such as this one:

 

For more information, please visit the NOFAS webpage for expectant mothers, and on light drinking during pregnancy.

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FASD Month Art Contest Winners Announced! https://www.nofas.org/2017/09/11/fasd-month-art-contest-winners-announced/ Mon, 11 Sep 2017 17:00:07 +0000 https://www.nofas.org/?p=8455 read more →]]> NOFAS congratulates the winners of this year’s FASD Month Art Contest!

We received over 40 submissions from across the country.  Click here to view the other entries to the contest.

First Place Winner: Nia, age 11

Second Place Winner: Naika, age 9

Third Place Winner: Anthony, age 17

 

Get more information on the FASD Art Contest here.

FASD Month homepage.

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Annual NOFAS Gala Celebrates Moms and Healthy Pregnancies https://www.nofas.org/2017/09/05/annual-nofas-gala-celebrates-moms-and-healthy-pregnancies/ Tue, 05 Sep 2017 15:19:40 +0000 https://www.nofas.org/?p=8391 read more →]]> Join NOFAS this fall to salute mothers, healthy pregnancies, and Fetal Alcohol Spectrum Disorders (FASD) champions at the 2017 NOFAS “Moms Prom” Gala on November 8 in Washington, D.C.

Dear NOFAS friend and leading FASD champion Alaska Senator Lisa Murkowsi returns as Honorary Host. She will help NOFAS honor Virginia Senator Tim Kaine, Ohio Senator and Mrs. Rob Portman, and the American College of Obstetricians and Gynecologists, a vital NOFAS partner in ensuring alcohol-free pregnancies and healthy newborns.

In addition to the honored guests, the Gala will feature individuals and family members living with FASD and advocates dedicated to the cause including generous event sponsors, Tom and Sheila Rabaut, NOFAS Chair Kate Boyce Reeder and Joe Reeder, Distilled Spirits Council of the United States, DRS Technologies and the global financial services firm UBS, among many, many others.

The “prom” begins at 6:00 p.m. at the Marriott Marquis Washington–black tie and prom attire optional–with a reception and spectacular raffle and silent auction, followed by dinner and a live auction. After dinner hit the dance floor to fabulous live music, pose for a glamorous photo, and share a kiss with your favorite prom queen or king!

View the 2017 NOFAS Gala Sponsorship Packet, and make your pledge or buy tickets using the Gala Sponsorship Commitment Form by October 27. Contact Kate Boyce Reeder or NOFAS President Tom Donaldson with any questions.

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September is FASD Awareness Month https://www.nofas.org/2017/09/05/september-is-fasd-awareness-month/ Tue, 05 Sep 2017 14:31:35 +0000 https://www.nofas.org/?p=8387 read more →]]> September marks the annual observance of Fetal Alcohol Spectrum Disorders (FASD) Awareness Month, and NOFAS has a full slate of activities planned throughout the month to draw attention to the disabilities associated with prenatal exposure to alcohol, drugs, and other substances known to harm human development before birth.

NOFAS, its partners, and the international FASD community are advocating for greater awareness and investment in FASD services and prevention, recognition of FASDs among practitioners, professionals and policymakers, and for all parents-to-be to take a nine month break from alcohol, tobacco, drugs, and other harmful substances.

FASD Awareness Month began in 2015, expanding on the successful International Awareness Day–recognized each year on the ninth day of the ninth month, September 9, representing the nine months of an alcohol-free pregnancy–founded in 1999 by Teresa Kellerman, Bonnie Buxton and Brian Philcox.

Check out what NOFAS has planned and how you can get involved in September 2017’s FASD Awareness Month!

 

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Supportive House for Young Adults Living with FASD Open for Business https://www.nofas.org/2017/08/21/supportive-house-for-young-adults-living-with-fasd-open-for-business/ Mon, 21 Aug 2017 16:50:36 +0000 https://www.nofas.org/?p=8362 read more →]]> Aloha Community Platteville, the first supportive-living facility specifically developed for young adults with an FASD is open and accepting applications for residents. The house was developed by FASD Communities and is managed by program director Jamie Klein. They are ready to select the first four residents, who will live in a safe and healthy environment and learn agriculture, livestock farming, and other skills, while enjoying the beautiful  and peaceful surroundings of rural Wisconsin.

Contact FASD Communities, apply for residency, and schedule a visit to Aloha Community Platteville today!

Aloha Community Platteville Now Accepting Applications

 

This post was edited on September 1, 2017 to correct spelling errors in the name of the contact organization and the application link.

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NOFAS Affiliate Spotlight: FASDinNC https://www.nofas.org/2017/07/26/nofas-affiliate-spotlight-fasdinnc/ Wed, 26 Jul 2017 16:13:47 +0000 https://www.nofas.org/?p=8283 read more →]]>

WASHINGTON, D.C. – The National Organization on Fetal Alcohol Syndrome (NOFAS) celebrated the work of its North Carolina affiliate organization, FASDinNC, highlighting their hard work and advocacy on behalf of those with Fetal Alcohol Spectrum Disorders (FASD), an umbrella term describing the range of effects that occur in an individual who was exposed to alcohol before birth.

During the affiliate summit in June, FASDinNC was busy on the hill advocating for support to further awareness and research regarding Fetal Alcohol Spectrum Disorders (FASD). FASDinNC Coordinator Amy Hendricks met with Senator Richard Burr’s staff, where she highlighted that “Continued federal funding for the CDC and NIH FASD research are essential to help prevent FASDs and create new interventions for individuals affected by FASDs.”


Elizabeth Montgomery Lee with her Son Mak at the Capitol Hill office of Senator Thom Tillis.

“One of the biggest issues is the amount of information available,” said Montgomery Lee, an Education Specialist with FASDinNC. Elizabeth and her son Mak, who has an FASD, attended a meeting with staff in Senator Thom Tillis’ office. “It was important to us that the Senator’s staff took the time to listen and get a comprehensive understanding of the challenges living with an FASD brings.”

FASDinNC continues to do vital work on this issue at home. Outreach efforts include the delivery of trainings for professionals that work with women of childbearing age, as well as a social media campaign this past spring that reached over 225,000 18 – 44 year-old women across NC in just three months. In conjunction with this campaign, posters were printed and promoted by All Over Media on the back of bathroom stall doors. This signage appeared in restaurants and bars in Raleigh/Durham, Greenville, Wilmington and Fayetteville and were visible to the public for three months at each location, reaching up to 15,000 people per location per month. In addition, twelve NC Preventing Underage Drinking (PUD) Coalitions received and began distributing 800 pieces of FASDs materials/posters to convenience stores in communities across the state. The coalition members also began checking for mandated warning signage in ABC stores. Hendricks believes strongly that all places that sell and serve alcoholic beverages should have signage in prime view that promote the message that alcohol and pregnancy do not mix.

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FASD Communities Seeking Program Director for Aloha Community Platteville https://www.nofas.org/2017/07/24/fasd-communities-seeking-program-director-for-aloha-community-platteville/ Mon, 24 Jul 2017 15:56:18 +0000 https://www.nofas.org/?p=8271 read more →]]> FASD Communities, a not-for-profit organization dedicated to providing supportive housing and life skills to young adults affected by FASD and a member of the NOFAS Affiliate Network, is seeking a Program Director for its Aloha Community Platteville house in Wisconsin.

Located in Platteville, a one-hour drive from Madison, WI and Devenport, Iowa, and within a three-hour drive of Milwaukee and Chicago, Illinois, the facility is fully licensed and is move-in ready for the new director and residents!

This is an exciting job for someone who is compassionate, wants to make a difference in someone’s life and has the desire to build and replicate this program. The ideal candidate is a self-starter, is a leader and has strong communication and organizational skills, a business background, and must be compassionate towards young adults living with FASD.

Experience working with people with disabilities, at risk youth or social work is helpful. An understanding of FASD is also preferred, however FASD Communities will provide training in this area. Farming or agricultural experience is also a plus.

The Program Director will be responsible for developing appropriate programs for residents, hiring and oversight of additional staff, maintaining accurate documents and records, and adhering to licensing requirements. The Director reports to the President of FASD Communities.

The position could include housing for an individual or couple, and salary will be commensurate with relevant experience.

For more information including pictures of the Aloha Community Platteville house and property visit www.fasdcommunities.org. To apply, send your resume and a cover letter describing your relevant experience, knowledge about FASD, and why you are interested in the position to Gigi Davidson at FASD Communities.

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NOFAS Affiliate Spotlight: Arkansas None for Nine https://www.nofas.org/2017/07/13/nofas-affiliate-spotlight-arkansas-none-for-nine/ Thu, 13 Jul 2017 17:53:43 +0000 https://www.nofas.org/?p=8235 read more →]]>

WASHINGTON, D.C. – The National Organization on Fetal Alcohol Syndrome (NOFAS) celebrated the work of its new Arkansas affiliate organization, Arkansas None for Nine, highlighting their accomplishments on the state level, and advocacy on behalf of those with Fetal Alcohol Spectrum Disorders (FASD), an umbrella term describing the range of effects that occur in an individual who was exposed to alcohol before birth.

During the annual NOFAS affiliate summit, Arkansas None for Nine Vice President Carol Rangel met with Senior Senator John Boozman in his Washington, D.C. office, as well as staff in Representative French Hill’s office. During the meetings, she talked about the impact of Fetal Alcohol Spectrum Disorders (FASD) on Arkansas, and the work her organization is doing to inform the public and provide support to those affected.


Arkansas None for Nine Vice President Carol Rangel with Arkansas Senator John Boozman.

 

“There are many challenges to advocacy for this cause,” said Rangel, “1 in 20 school children are affected by an FASD, including 80 percent of all foster kids.” Prenatal alcohol expsoure is the leading known cause of intellectual disability in North America, and it is 100 percent preventable. Unfortunately, there is an enormous amount of stigma around the disorders. Senator Boozman and his staff listened intently to what we had to say, as did the kind staff in Congressman Hill’s office. We were so happy to bring this incredibly important issue into the consideration of our federal delegation, and make our case for the vital federal funding FASD receives.”

On the state level, Arkansas None for Nine recently submitted a proposal to the Arkansas State Legislature to help expand the scope of FASD research. Interim Study Proposal 2017-020, brought by State Representative Deborah Ferguson and State Senator Keith Ingram. The proposal requests funding to examine the impact of FASD on the criminal justice system, and to research more effective methods to rehabilitate affected individuals. “FASD costs Arkansas over $53 million a year, and no small part of it is spent on incarcerating individuals with these disorders who go undiagnosed,” said Rangel of FASD and its impact on the criminal justice system.

During FASD Awareness Month this September, Arkansas None for Nine will host their fifth annual FASD conference on Thursday, September 14th, 2017 at The Summit church in North Little Rock, Arkansas from 8:30AM to 4:00PM. On September 6th, Governor Asa Hutchinson will sign a Proclamation declaring September 9th FAS Awareness Day in Arkansas.

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Aloha Community Platteville Now Accepting Applications https://www.nofas.org/2017/06/26/aloha-community-platteville-now-accepting-applications/ Mon, 26 Jun 2017 17:00:30 +0000 https://www.nofas.org/?p=8180 read more →]]> Aloha Community Platteville, an FASD supportive housing program in the rural college town of Platteville, Wisconsin, is seeking young adults living with FASD to be its first residents.

FASD Communities has purchased and furnished the four-acre property, a one-hour drive from Madison and Devenport, Iowa, and within a three-hour drive of Milwaukee and Chicago, Illinois. The  pilot program, the first of its kind in the Midwest, has completed all licensing requirements and has hired a program director effective July 1. The community will provide oversight, life skills coaching, and job mentoring as well as a safe environment.

If you or your loved one is living with an FASD, please fill out the Preliminary Application to be considered for residency. Also, visit the redesigned FASD Communities website for more information on Aloha Community Platteville and the organization’s leaders and advisors.

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