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Event Details
By golfing in the 5th Annual MOFAS Golf Classic, you can help give Minnesota children the best start in life by helping to prevent prenatal alcohol exposure.  Each year, over 8,500 babies are born in MN with prenatal alcohol exposure. Nationally, Fetal Alcohol Spectrum Disorders (FASD) affects one out of every 100 live births. With your help, we can change this. FASD is 100% preventable.

Proceeds raised at this event will help ensure that all women will know that there is no safe level of alcohol during pregnancy, and that individuals and families already impacted by prenatal alcohol exposure will be identified, supported and valued.

Thank you for making a difference with families, caregivers, educators, health care providers, legislators and future generations – right now, right here in Minnesota.

Entry fees
$125 per golfer or $475 per foursome. Fee includes:

• Access to driving range
• Greens fee & cart
• Complimentary beverage ticket
• Golfer goodie bag
• Dinner, program, awards

Note: The charitable deduction is $40 per golfer. Not a golfer but want to join the fun? Dinner-only tickets are just $40!

Questions? Contact Danielle Gangelhoff at 651-917-2370 or danielle@mofas.org.

Thanks to our Sponsors so far!

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It’s hard to be mad at him knowing he has a disability but it’s hard to not be mad or frustrated when you set rules to protect him that he cannot ever seem to follow.

I know he is only 10, almost 11, but projecting forward it has me concerned about his future. I have to stop doing that and live in the present but inability to get through to this child leaves me feeling puzzled, angry, inadequate, and worried.

In the past he has taken off and got lost in our neighborhood, jumped into a dumpster at a building site, and was hanging out with some children trying to get into an abandoned house. I know he thought what he was doing was fine, I explained to him reasons why he shouldn’t do A, B, or C but I often feel it goes, as they say, ‘in one ear and out the other!’ In his case, it does that often. I don’t think he really connects the dots so that he can get the BIG picture. This is or can be one of the most trying things for those raising or those affected by FASD. Only time will tell but I hope at some point his dots will connect and he will be able to see how connecting them will make his life easier.

If you can relate to Peggy’s message and would like to learn more about the Circle of Hope in Minnesota, we would love to hear from you! Contact Sue Terwey at 651-917-2370 or sue@mofas.org.

Do you detest arguing? As guest expert for the MOFAS  Virtual Family Center chat on Wednesday, April 25, 2012, I gave parents of children with Fetal Alcohol Spectrum Disorders (FASD) two hot tips for cooling down any argument:

Do we need a law in effect that actually states that it is against the law for a woman to drink while pregnant? Should we legislate for that? Should we line up a bunch of people with FAS and say this is what happens when you drink while pregnant? Well, that won’t work because most of us have invisible disabilities.

Do we have to draw images with umbilical cords with a handle that has the word KEG on the top of it with the mom’s hand on it leading toward the baby?

What gets me more is the lack of knowledge in this society that it even exists. They say the numbers are up around 50 in 1000 kids have it and it is even higher than that because most mothers do not admit that they drank while pregnant. Stats today say that
there are more people with FAS being diagnosed than people with autism.

How come I can go to a man in a Barnes and Noble who is supposed to be very knowledgable about books and topics and he look at me like he had never heard the words Fetal Alcohol Syndrome? This was a man at least in his 50′s. Are we really there?

See, to people who have it and to their EBs (external brains) or caregivers, this is something they live each and every day. We eat, sleep, and breathe FAS.

I am not asking for that. All I am asking for is for more awareness. A month just for FAS. Commercials. Billboards. Speakers. Inservices in schools on FAS. The Rainman and Temple Grandin of Autism. FAS needs that. We need advocates. We need legislators paying attention and passing laws on this. We need chapters all over the country. We need centers for FAS adults and children all over this country. We need all the helps we can get.

IEP’s are not built for kids with FAS so they get lost in the system or misdiagnosed to fit somewhere else. So, they are treated as if they are autistic but they are FAS. Yes, there are a lot of similarities, but it is like apples and oranges. Completely different diagnosis. Completely different brain.

When I was first told I had significant brain damage and that I would never graduate high school, it was 40 years ago. I was told that I had such significant retention and comprehension problems I would simply not make it. I was told that that the parts of the brain that controls the eyes were so damaged that I would never be able to drive. My eyes do not converge. My eyes have n0 depth perception. My sensory is off the charts. My ability to process like others is significantly stunted.

Oh, I’m smart, they said. Very high IQ in fact. But I would have no clue how to apply anything I knew.

Huh.

What do we do with that?

That was 40 years ago.
How much further are we than that.
We did link it to alcohol.
A genetics person give me a 100% FAS diagnosis with the words that “alcohol significantly contributed to my disabilities.”

So where does that leave us today?

FAS people do not have the ability a lot of times to advocate for themselves, but that is what we have to do. We have to educate everyone around us including our own doctors because they simply are in the beginning stages of even knowing what FAS is.

I know FAS individuals who tell me that they have to take fliers to their doctors to explain to them what it is.

There is noone more determined to LIVE and to make it in this world than someone with FAS. They literally are the most determined people I know. They will make it no matter what. AND we will make it without the helps, but just how much further
along would we be if we did?

Just how much further along would someone with FAS be if they had educators, doctors, huge centers of research and
commercials, advertising, awareness months, ribbons, and moneys pouring into this cause. What if everyone knew about it and I would never have another person look at me again as if they had no clue what FAS was.

What if people knew about FAS as much as they know about autism?

What if we actually had a diagnosis in the DSM V?

What if?

Oh, we are going to make it on our own.
BUT, we will be so much further along if we have all that in place.
if we had the helps
if we had the ieps with the proper diagnosis on it so Fas kids got the right educational helps.

If they did, they might be able to be who they want to be when they grow up.
They might be able to get there faster.
They might be able to exert that energy they have to put in every day just for daily living and excel in a job and in life.

If people did it with us, not just our external brains or caregivers, but I mean society like they do autism and other DD’s…just imagine how far we could go.

Just imagine how much less of us there might be!

That would be a good problem.

Maybe a mom just might think twice before having a glass of wine while pregnant.

If we can save one baby from becoming FAS…it would be worth it.

“What,” he said with a complete puzzled look.

“Fetal Alcohol Syndrome.”

“Fetal…?”

“Yea. Fetal Alcohol…”

“Is that the name of a book?” he asked.

“That’s a topic,” I said.

“Oh, no. We don’t do topics. I can only put in names of a book. What is it again?”

“Fetal…”

“Well a few books came up in our system, but we do not have any in the store. Sorry.”

“Okay.”

He looked at me like I had three heads.

Why is it that there are more people with FASD than autism, and it is one of the worst DD’s out there, but yet people still have not
heard of it and they still literally have no clue how to work with people who are FASD.

I mean NO CLUE.

We wonder why there are no IEP’s with FASD on them.

People really really really need to get educated about this.

I would like to know how we can do that. We need an FASD ribbon.

I know we have an FASD day on 9/9 at like 9:00. So it is like a FASD moment. It represents the 9 months that a woman is pregnant.

You say autism and people know exactly what you mean. You say Downs syndrome and everyone knows. But Fetal Alcohol Syndrome?

What’s that.

Wow.

Putting my hand on my head calms me. My insides are anxious and just that feeling of a hand on the head is an instant calm, even if it is my own.

I think one of my biggest frustrations is communication. I could walk around with a pencil and paper and communicate all day, but that is not how the world does it. We are expected to do what the rest of the world does. What if we all walked around with different forms of communication. Not just speech. A lot of my frustrations are simply because I am not able to communicate what I want or need to.

The people who I like to be around are those who help me to communicate. They are patient. They don’t force me to tell them what I need to in their allotted time. They don’t let me feel small because I am having a rough time getting the words out.

Finding ways for someone with FASD to communicate can really alleviate a lot of frustration. I know I can act out, get agitated, get angry just because things build up and I am not able to communicate the way others do. We really are forced to be in a world where walking around with a pencil and a paper to communicate would just be looked at as weird.

I wish society was more accepting of disabilities. The numbers are growing that having a disability is almost the norm. There are so many people with autism and FASD that you would think that there would be different options of communication that are acceptable by now…lol. I know thats a stretch, but let an FASDer dream. I would love to just whip out my pad and pencil while in a mall talking with friends and just write so I can say exactly what I mean instead of sit there for a minute trying to get my brain to connect with my mouth to get the words out. And even still, not even say exactly what I mean, but bits and pieces of what I wanted to say. It’s okay. But it really can make a day in the life of someone with FASD, very hard.

It is crucial that the FASDer have people in their immediate circle who can help them to communicate. Let them find their way to communication. Help bridge that gap.

Encourage drawing, singing, writing song lyrics, photography, and writing. Let them build with legos or find other creative ways to express who they are and how they see the world.

I know for a fact that our silence brings about a deeper thinker. We are very deep thinkers and we connect with life in a way that others do not. That adds to the frustration, I think. I see so much. I see pain deeper. I see heartache in a way that I feel it. I want to
convey people’s pain and the way I see things so I start shooting my camera or writing because I feel this stuff and I can’t find another way to get it out, but to do it creatively. It really helps eliminate some frustration.

We get stuck. We don’t want to be stuck in our frustration where it gets to the point that we act out regretting later what we did. My thing is punching walls or myself.

I hate with all of me to be stuck. I want to always be moving forward and I am constantly trying to find a way to do that. How can I learn. How can I move forward. This didnt work. This didnt work. I will work until I find a way to make it work. How can I do it?

How can I communicate? Help us find ways to do this. Sit down next to us. Quietly. Meet us where we are. Let us calm and find a way to tell you what we are feeling. Let us tell you how we see the world. Hand us a pencil and say write it down and tell me. Draw it. Write me a song or a poem that conveys what you want to say. Is there a character on tv that you can relate with that you can share to tell me how you feel? There has to be a way and that way has to be okay for everybody in the room.

Sometimes it is nice when people (society) comes to the world of those who have disabilities and they are forced to communicate the way we understand instead of us having to always work outside of our brain abilities just so its socially acceptable.

Helping us find ways to communicate equals a calmer house. Equals a calmer FASDer or someone with autism. It means frustration will melt before a meltdown or a blowup. When you see a meltdown coming or a blowup, hand them a pencil and paper and ask them to tell you exactly what they are feeling. Write. Do whatever you need to tell me how you feel. Do it please because I really want to know.

If you can relate to Melissa’s message and would like to learn more about the Circle of Hope in Minnesota, we would love to hear from you! Contact Sue Terwey at 651-917-2370 or sue@mofas.org.

5-10 hours per week, days and times are flexible (more hours available if needed). This is an unpaid position.

Specific duties will include:

Donor Relations/Grantwriting

• Research prospective individual and major gift donors, including new donors and past donors
• Manage, maintain, and utilize Trailblazer donor database
• Assist in donor communication through: mailings, emails, donor recognition pieces and disseminating organizational information to donors
• Making follow up calls to sponsors and donors
• Generate gift acknowledgements
• Research new grant opportunities
• Prepare materials for grant & foundation applications
• Research possible corporate donors/partners
• Handle special projects as requested

Special Events

• Assist with preparation for 2012-2013 MOFAS fundraising events, including the 5^th Annual MOFAS Golf Classic and
  the 10^th Annual Benefit for MOFAS
• Coordinate in-kind donations and auction/raffle items, including solicitation, securing and cataloging
• Research event funding prospects, including corporate and private sponsors

Experience:

• Current undergraduate or  graduate
• Grant writing and donor research experience preferred
• Database software experience a plus
• Proficiency in MS Office Suite
• Excellent written and verbal communications skills are required
• Extreme attention to detail required
• Must be able to communicate effectively and professionally
• Be able to take direction; capable and willing to take initiative
• Willingness to work as part of a team
• Ability to prioritize, meet deadlines, work under pressure and multi-task

How to Apply:

Please send cover letter, resume, and short writing sample to Danielle Gangelhoff at Danielle@mofas.org. No phone calls please.

I look back now and realize Diane Malbin’s book title “Trying Differently Rather Than Rarder” really fit our circumstance. Trying Harder only seemed to be breaking him and not helping him to be successful.

Last year that same Special Ed. Director looked at me and asked, “Is your son happy”?  I realized that this was one of my answers to her initial question of what I want for my son. I didn’t have the heart to really answer her. Our Son was finishing the year in a program that was tailor-made just for him. The professionals in that program were caring and loving but it still wasn’t working at all! Again, confused, angry, sad.  That year we tried differently rather than harder and still – Nope, not working!

So, last summer our son started school at the SAFE Program in District 287. The SAFE Program is the only program that specifically educates children with FASD. The structure of the program is the same as another program that was really not a good fit for my son. So, I was anxious about the transition to this school. There were many times that I thought about homeschooling our son. I came the closest to making the discussion to homeschool instead of transferring him to the SAFE Program. I am not sure why but I was actually scared to have him in the SAFE Program. I soon learned that sometimes the thing I fear most actually could be the best thing that ever happened.

This year I haven’t had to drive him to school once! He loves school. He thanked God in a prayer one night for his school. He explained to God that he now realizes that he had to go to all those other schools to find this one.

Last night my husband and I attended Parent Appreciation night at our son’s school. They talked and taught us about the Nurtured Heart Approach. As I sat and listened to the children and staff talk, about how this approach has transformed their school, I realized that’s it! That is the last piece of the perfect fit for our son. He has a caring loving team that teaches him and helps him to be his best every day. They also use The Nurtured Heart Approach and that is also just right for him.

It may have taken two years but we finally found a place where our son is happy, learning and growing.