Dear Families,

The time is here to make your plans for the SLOS Family and Medical Conference to be held in Portland, Oregon, July 31st, 2015 – August 1st, 2015 at the DoubleTree by Hilton Portland. While we are still making many final arrangements, here is some basic information plus the registration form that we need back no later than July 20th, 2015. The earlier we receive it, the easier it will be for us to finish planning.

The SLOS SCIENTIFIC CONFERENCE is scheduled for 2017 in Cincinnati, OH.
This summer we will not be hosting a Smith-Lemli-Opitz Sydrome Scientific Conference in conjunction with the 2015 Portland SLOS Family Medical Conference.  

Instead, mark your calendar for the 2017 Smith-Lemli-Opitz Syndrome Scientific Conference scheduled for the summer of 2017 in Cincinnati, Ohio, which will be held in conjunction with the 2017 Cincinnati SLOS Family Medical Conference.

REGISTRATION FORM:  2015-SLO-Family-Conference-Registration-FORM
(this form is fill-able with Adobe Reader)

Conference Fees:

We know how important it is for the families to be able to attend and have this time to learn and share from others and the professionals, so we are trying to keep those costs down for you, our families, by providing a hotel with many amenities and that is close to the airport. To encourage attendance, and with an understanding of the burden of travel for our special families, the SLO Foundation subsidizes a great portion of the cost of the conference. The actual cost per guest that we are billed from the Hilton is $200.00. The Foundation is pleased to be able to offer to following prices for meals & sessions:
#1 SLO Family (1 parent/adult & 1 SLO child) = $50.00 for both (requires $25.00 Lifetime Membership)

#2 Lifetime Membership Adults/Children over 12 = $100.00 each (requires $25.00 Lifetime Membership)

#3 Siblings of SLO Child under the age of 12 = $50.00 each

#4 Non-Lifetime Members & Medical Professionals = $200.00 each

We continue to look for donations and sponsorships to offset the costs to our families. Please let us know of any opportunities that the Foundation can pursue.



A continental breakfast, session snacks and lunch are included in the cost of the conference for Friday – July 31st and Saturday – August 1st. There are many restaurants nearby if you wish to eat elsewhere. The Foundation will also be sponsoring an evening pizza party by the pool on Friday for those interested in attending.


Full payment for conference registration and t-shirts is due by July 1st, 2015 and will be non-refundable unless we cancel the event/order. Checks should be made out to and sent to:

SLO/RSH Foundation

C/O Carol McFarlane

2237 Southwood Drive

White Bear Lake, MN 55110


Please do NOT pay for your conference registration through the website. (Network for Good link) This link is for donations only.


Presentations/Sessions/Q&A/Tour of OHSU research study:

We are currently in the planning stages for speaker sessions. It is shaping up to be an EXCELLENT family medical conference!  For this conference, there will not be a scientific component to the study. Sessions will begin early on Friday morning and last through the afternoon. On Friday afternoon we plan to travel to Oregon Health Science University to visit the clinic and hear about the STAIR 7001 Smith-Lemli-Opitz research study being conducted at OHSU and various other clinics across the US. There are new family-friendly protocol changes that we are excited to tell you about. Please take the time to compile questions you have. If you submit questions now, we can provide them to the appropriate presenters so that they can encompass them in their presentations – especially research study questions.



Friday – July 31st 9:00 am – 4:00 pm

Saturday – August 1st 9:00 am – 1:00 pm


Travel and Transportation:

If traveling by plane, you should be flying Portland International Airport (PDX). There are several websites to help you find the cheapest tickets:

When traveling by air, the Transportation Safety Administration has guidelines you must follow such as a 3 oz. limit on liquids. It is recommended that you call the airline to let them know you have a special needs child and that you will have special requirements for medications. You should carry on all medical equipment and medicines to avoid having it lost if your luggage gets lost. You also should have a note from your child’s doctor listing all the medications and fluids including dose and container sizes they will have on the flight, and it is best to have their feeding schedule with amounts listed. This is extremely important if you do not use closed containers of formula. When you get to security, before waiting in line, alert the TSA officials immediately that you have a special needs child and medicine/extra liquids. You may have to remove your child from any car seats or strollers, and shoes will need to be removed. Once at the gate, alert the attendant that you need extra time to board with your special needs child.

Transportation from the airport to the hotel is available thru MAX (the public light rail) or by shuttle. 



If you haven’t already done so, we encourage you to make hotel reservations as soon as possible. The cut-off date for the discount rate is July 1st, 2015 (or as long as there are rooms in block available); rates and availability cannot be guaranteed after this time. Please let us know if you have made plans to stay at a different hotel. 


DoubleTree by Hilton Portland

1000 NE Multnomah Portland, OR 97232

(503) 281-6111


You can make your reservations as follows using your Personalize Group Code is: SLO 


In House Reservations: Guests can call the hotel directly at 503-281-6111 and asking for in house reservations. The reservations department is open Monday – Friday from 8 AM to 4 PM (West Coast)


DoubleTree by Hilton Central Reservations Information: Guests can make reservations by phone 24 hours a day and 7 days a week through the DoubleTree by Hilton Central Reservations office by calling toll free 1 (800) 996-0510.


Online Reservations: go to:


Hotel Block Cost/Parking:
$179 per room/night – single queen
$199 per room/night – double queen

There is a $5/day discounted parking rate for the conference (regular price: $20)



Conference t-shirts are available for purchase. We will only be ordering the sizes and amount of T-shirts that we receive payment for, so it is important to fill out this information and submit your payment on time. Payments received after the June 1st, 2015 cutoff will be refunded. T-shirts are $15.00 each, $17.00 for XXL & XXXL.


Child Care:

We will not be able to provide nursing or child care, so please bring activities/movies to keep your children entertained. Please refrain from bringing play-dough or anything that will leave lasting marks as the hotel will charge us for any cleaning services required above and beyond their normal procedures. As in past years, there will be a separate children’s activity room near the conference meeting room in case your child needs a break from the sessions.


We highly recommend you check the weather online before your departure. Don’t forget the sunscreen for yourselves and your children! Also, please dress comfortably; this is a casual, not a formal affair.



We are hoping to capture a group photo at this conference as we have done in the past. If you do not want us to use any pictures of your family, please notify us of this request. All photos we take will be shared with all families from an online share file.

Thank you for your interest in attending the 2015 SLOS Family Conference – we really hope you can attend! We are really looking forward to seeing returning families and meeting new faces. Have a good winter, and we will see you this summer! 


If you have any questions, don’t hesitate to contact Carol McFarlane, SLO Conference Coordinator, by email or by phone: C: 651-769-3338 or H: 651-429-6511 (Central Standard Time).


REGISTRATION – send forms and registration fees to Carol at:

Carol McFarlane

2237 Southwood Drive

White Bear Lake, MN 55110


 2017 Smith-Lemli-Opitz Family & Medical Conference – Cincinnati, OH

Hosted by: Dr. Laura Woollett

Cincinnati Children’s Hospital Medical Center 2015 Family and Medical Conference Registration Form (attached)