9th International Family & Professional Conference

Every two years, the LGS Foundation organizes a comprehensive multi-day educational meeting. The conference brings together more than 350 LGS family members and epilepsy professionals from around the world to better understand the causes, treatments, and how to live with LGS. Talks cover everything from treatment options to services and include information on improving quality of life, accessing resources, and much more. In non-conference years, the LGS Foundation hosts the LGS Research Meeting of the Minds Conference for professionals and families and focuses on LGS research. We can’t wait to see you! 

9th International Family & Professional Conference

July 12-14, 2024

Sheraton Grand at Wild Horse Pass 

5594 W. Wild Horse Pass Blvd. 

Phoenix, AZ 85226

Register to Attend IN PERSON OR VIRTUALLY Now! 


Attention!! Scholarship Recipients

SCHOLARSHIP RECIPIENTS REGISTER HERE

Scholarship applications were open from 10/23/23 – 11/26/23. They are now closed.

Questions? Email us at info@lgsfoundation.org.


Event Program Now Available

(Agenda is Subject to Change) 

VIEW THE PROGRAM


How often and where is the conference held?

The LGS Foundation hosts its International Family & Professional Conference in-person and virtually every 2 years. The location for our 2024 event will be the Sheraton Grand at Wild Horse Pass located at 5594 West Wild Horse Pass Blvd Phoenix, AZ 85226.  Our last conference was held in 2022 at the Gaylord Texan Resort and Convention Center in Grapevine, TX.

How do I book Hotel Accommodations if I am not a scholarship recipient?

Book your room under our group rate of $189 for Traditional King or 2 Queens, plus prevailing taxes.

Please notify the hotel during the booking process if an accessible room is required. The maximum capacity for a King Room is 3 guests and for a 2 Queen Room is 4 guests. The hotel strictly adheres to safety policies and will not allow more than 4 for this room type.

Room reservations and rates are available on a first-come, first-served basis until June 18, 2024, or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel’s prevailing rate. All reservations must be guaranteed with a credit card. 

The pet policy at the Sheraton Grand at Wild Horse Pass is: No Pets Allowed (service animals only

Is onsite registration available?

Onsite registration IS NOT available. All in-person attendees must register online by July 1, 2024 to attend in person. All virtual attendees must register online by July 4, 2024.

I am unable to attend in person. How do I register for virtual sessions?

Virtual registration will open on Monday, January 8, 2024, and remain open until July 4, 2024. Please register online www.lgsfoundation.org/lgs-conference

What is included in my registration fee?

Your registration fee includes admission to all sessions, breakfast and lunch each day, Friday evening Welcome Reception and our Saturday evening Dinner and Dance celebration. 

What is the cancellation policy?

Cancellation requests must be submitted in writing to Kathy Leavens at info@lgsfoundation.orgCancellation requests received on or before May 1, 2024  are refundable, subject to a $50 administrative fee.

Cancellation requests received after May 1, 2024, are nonrefundable. Exceptions may be made for family emergencies and must be submitted via email to Kathy Leavens at info@lgsfoundation.org. 

No-shows at the 2024 Family & Professional Conference are not eligible for a refund.

If you cancel and are entitled to a refund, you can expect the refund within 30 days. All refunds will be issued back to the original payment type.

Are scholarships available?

Yes, scholarship applications were open from October 23, 2023 to November 26, 2023. Scholarship applicants will be notified via email no later than Monday, January 8, 2024.

When should I arrive?

The conference kicks off on Thursday, July 11, 2024, with sessions beginning at 5:00pm local time. 

The full agenda will be available on our website at www.lgsfoundation.org/lgs-family-conference

Is there onsite patient care and/or childcare available?

An Activity Room will be available for families and patients with LGS at no cost, but they must have a caregiver in attendance with them at all times. No nursing staff or aides will be provided, so please plan accordingly for your child’s care. The Activity Room will include activities and crafts for LGS patients and family use. Sessions will be live-streamed in the Activity Room so you will not miss session content.

What is the dress code?

While there is no set dress code, we suggest business casual for the sessions. We invite you to dress comfortably. You may want to dress in layers; conference centers often range from drafty to stuffy. July in Arizona has an average high of 107 degrees and an average low of 84 degrees.

Where do I pick up my registration packet? 

You can find the LGS registration area in the Akimel Foyer on the first level of the hotel.

You can check-in and pick up your registration packet at any of these times:

  • Thursday, July 11th from 3:00pm - 7:00pm local time
  • Friday, July 12th from 8:00am - 5:00pm local time 
  • Saturday, July 13th from 8:00am - 5:00pm local time 

Be sure to give yourself enough time to register and pick up your conference packet and badge before attending your first session. We suggest you wear your badge for entry into the sessions and the evening social events. 

Are any of my costs tax-deductible?

Based on 2020 federal tax regulations, which may be different for 2024, you can deduct the cost of registration and travel to the 2024 LGS Family & Professional Conference if the conference concerns the chronic illness of you, your spouse or your dependent. The deduction applies ONLY to registration and travel; it does NOT apply to meals or hotel stay. To qualify, the majority of the time spent at the conference must be spent attending sessions on medical information.

You can only deduct these costs as medical expenses if you itemize your deductions by filing a Schedule A on your tax return, and you can only deduct the portion of unreimbursed medical/dental expenses that add up to being more than 7.5% of your AGI (Adjusted Gross Income) for the year. (Example: Your adjusted gross income for 2024 is $100,000; you spent $1,000 on registration and transportation for the 2024 LGS Family & Professional Conference and had $5,000 of other unreimbursed medical expenses. You add $1,000 to $5,000 for a total of $6,000, which is less than 7.5% of your $100,000 adjusted gross income. You would not qualify. However, if your unreimbursed medical expenses were $8,000 plus $1,000 for conference registration and travel, that would make a total of $9,000 of unreimbursed medical expenses. Since $9,000 is greater than $7,500, you would qualify for deducting the amount over 7.5% on your tax return – in this case $1,500 would be deductible.)

We cannot guarantee eligibility for tax deduction and encourage you to review IRS Publication 502 for further information

LGS Sibs Camp is available for LGS siblings ages 6 - 13 years whose parent(s) are registered to attend the conference. Children must be potty trained to attend. 

The cost for the camp includes all activities, as well as breakfast, lunch, and snacks. 

Camp Schedule: 

  • Friday July 12th: 8:30 am - 5:00 pm 
  • Saturday July 13th: 8:30 am - 5:00 pm 

Onsite activities and workshops are planned for participants. If you do not wish your child to participate in a particular activity, you will need to arrange for separate childcare during that time. 

Activities include: 

  • Cultural Activities 
  • Arts & Crafts
  • Games
  • Climbing Wall 
  • Movies 
  • Video Games 
  • Variety of Seasonal Activities 

For questions, email us at info@LGSFoundation.org


FLAGSHIP HOTEL INFORMATION

Sheraton Grand at Wild Horse Pass

5594 West Wild Horse Pass Blvd

Phoenix, AZ 85226

1-866-837-4156

Hotel Website

Book your room under our group rate of $189 for Traditional King or 2 Queens, plus prevailing taxes.

Please notify the hotel during the booking process if an accessible room is required. The maximum capacity for a King Room is 3 guests and for a 2 Queen Room is 4 guests. The hotel strictly adheres to safety policies and will not allow more than 4 for this room type.

Room reservations and rates are available on a first-come, first-served basis until June 18, 2024, or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel’s prevailing rate. All reservations must be guaranteed with a credit card.

The pet policy at the Sheraton Grand at Wild Horse Pass is: No Pets Allowed (service animals only


Please plan to make your own travel arrangements to the Phoenix Sky Harbor International Airport (PHX) – 15 miles/20-25 min from hotel and refer to the Conference agenda for scheduling.

GROUND TRANSPORTATION FROM PHX

Travel Distance: Approximately 15 miles to the Sheraton Grand at Wild Horse Pass

Travel times and costs below are estimates and final travel times are dependent upon traffic 

TAXI

Fee:   $50-$60 USD; per cab

UBER/LYFT

Fee:  $35-$45 USD; per car


Driving directions from the airport

From Sky Harbor International Airport, Wild Horse Pass is just 15 miles from the airport, located off I-10 East and Wild Horse Pass Boulevard.

From Phoenix

From the heart of downtown Phoenix, it’s 24 miles to Wild Horse Pass, which is located off I-10 East and Wild Horse Pass Boulevard.

From Scottsdale

From Old Town Scottsdale, there are two routes (21-25 miles). You can start on AZ-101 Loop South or travel west and south; both paths lead you to I-10 East and Wild Horse Pass is located off the Wild Horse Pass Boulevard Exit.


LOCAL TRANSPORTATION

Wild Horse Pass Shuttle (FREE)

The frequent shuttle service covers transportation between Gila River Resorts & Casinos - Wild Horse PAss, Sheraton Grand at Wild Horse PAss, Whirlwind Golf Club, and Phoenix Premium Outlets.

Parking (Complimentary)

Parking for all Wild Horse Pass attractions and businesses are both free and plentiful.

Thanks to the generous support of our friends at Lundbeck & Takeda, the LGS Foundation provides a limited number of family scholarships to individuals or families who might otherwise not be able to attend the Family & Professional Conference.

In addition, other community-based civic organizations may offer full or partial funding for individuals and families to attend conferences related to disability research, advocacy and services.  We encourage those interested in receiving financial support from the LGS Foundation to first apply to various local organizations, prior to submitting this scholarship request.

Scholarship applications were open from 10/23/23 – 11/26/23. They are now closed.

Additional Travel Resources:

  • The Rare Disease Educational Support Program (offered by NORD) is designed to offer rare disease patients and/or their families/caregivers an opportunity to participate in educational programs and conferences that offer rare disease content.
  • Angel's Hands Foundation (AHF) assists families with expenses related to attending national conferences to learn about the latest treatments and research on their child’s disease.
  • The ARC of the United States: Each chapter offers different programs and services so you should check with your local chapter to see what is available.
  • The National Association of Councils on Developmental Disabilities (NACCD): Every state has a DD Council with different programs and services. Some states set aside money for conference attendance and education.
  • Medicaid Waiver Programs: If your child is enrolled in your state’s Home and Community-Based Services program, check with your case manager. Some waivers offer educational assistance for parents to attend conferences, paying the registration fees.
  • Other Potential Funding Sources: Funding may be available through your church or synagogue or through local fraternal organizations or clubs such as Kiwanis, Rotary or Lions Club.

Requests for financial assistance should be made early so arrangements can be made with the hotel if you are granted assistance. The conference room block is available on a first-come-first-serve basis. 


Here are some suggestions to make your trip less stressful:

  1. Make sure you have your current health insurance card/information in case of any medical emergencies. Review your policy regarding emergency care when traveling. Bring a hard copy of your Seizure Action Plan.
  2. Place medications in your carry-on bag and make sure to bring an extra week’s worth to be safe.
  3. Pack sunscreen for time at the pool!
  4. The weather in Phoenix, AZ can average from a high of 107 to a low of 84 during the month of July.

What is the closest hospital?

Closest Hospital – Dignity Health Mercy Gilbert Medical Center

  • Location: 3555 S. Val Vista Dr., Gilbert, AZ 85297 (16 miles / 23 min drive)
  • Phone: 866-395-1338
  • Dignity Health Mercy Gilbert Medical Center is a hospital that offers many services, including  emergency room services, and family birth center. Gilbert hospital is one of the best in Arizona. As part of the Dignity Health network, Dignity Health Mercy Gilbert Medical Center is dedicated to delivering high quality, compassionate care and access to Gilbert and nearby communities.

Closest Hospital – East Valley ER & Hospital

  • Location: 5656 S Power Rd., Gilbert, AZ 85295 (23 miles / 28 min drive)
  • Phone: 602-830-4911
  • East Valley ER & Hospital features expert ER care, shorter wait times, and an unwavering commitment to the wellbeing of our patients. Our state-of-the-art facility has an on-site laboratory, advanced imaging capabilities, inpatient medical detox and offers a full range of services for both adult and pediatric patients.

Children’s Hospital – Phoenix Children’s Hospital

  • Location: 1919 E. THomas Rd., Phoenix, AZ 85016 (20 miles / 30 min drive)
  • Phone: 602-933-1000
  • Phoenix Children's will be the leading pediatric health system in the Southwest, nationally recognized for exceptional care, innovative research and advanced medical education.

Nearby Grocery Stores & Pharmacy

Safeway

  • Location: 4005 E Chandler Blvd, Phoenix, AZ 85048 (5 miles / 12 min drive)
  • Phone: 480-759-9611

CVS

  • Location: 4657 E Chandler Blvd, Phoenix, AZ 85048 (5 miles / 15 min drive)
  • Phone: 480-598-6776

Target

  • Location: 4734 E Ray Rd, Phoenix, AZ 85044 (6 miles / 15 min drive)
  • Phone: 480-893-9333

The hotel has a mini refrigerator in each room, and ice/vending machines are located on each floor.


Here are some other essential travel tips:

1. Off We Go App: Download the Off We go Going on a Plane, app which breaks down new experiences into 12 fun steps for kids with intellectual disabilities or autism.

2. TSA Cares: Call 1-855-787-2227 for assistance with screening procedures or request a Passenger Support Specialist.

3. Pre-Board & Seat Selection: Board early and sit at the back for easy bathroom access and less chaos.

4. Carry Documentation: Have a doctor's note explaining your child's diagnosis and medications.

5. Keep Things Familiar: Pack favorite toys, snacks, and a change of clothes.

Join us for our biennial butterfly release where we will honor our children, celebrate hope, and remember those who have passed.

The Celebration of Life allows a special time dedicated to remembering and honoring the impact that each person has left in the world. The LGS Foundation will always honor the spirit of our loved ones whose lights continue to shine and light the way as we continue to strive for the Cures for LGS.

Releasing majestic butterflies speaks to the strength and beauty of the love we continue to share. Butterflies symbolize transformation, hope, and wishes that are carried to the heavens to be granted.


Thank you to our Sponsors

We value our relationship with each of our partners. In addition to financial support, partners provide their unique expertise and perspectives on the issues and needs our families face daily. And while it is our commitment to improve the lives of those impacted by Lennox-Gastaut Syndrome that brings us together, it is our shared understanding that collaborative initiatives generate steadier progress and stronger outcomes that will ensure our partnership proves valuable for the families and providers in our community.

Interested in becoming a sponsor? Email us at info@LGSFoundation.org


Past LGS Family & Professional Conferences

LGS Foundation Family & Professional Conference June 17-19, 2022

Thank you for joining us at the 2022 LGS Foundation Family & Professional Conference, June 17-19th, 2022 at the Gaylord Texan Resort & Convention Center in Grapevine, Texas.

Thank You For Joining Us

2022 conference sessions provided attendees with clinical and research updates on Lennox-Gastaut Syndrome, along with information on emerging therapies, special needs resources, and topics related to quality of life. This event allowed the opportunity to foster new relationships and collaborations, both for families and professionals. New this year was our Sib Camp and fun activities for those with LGS.

VIEW CONFERENCE PHOTOS HERE 

Please note that these photos are for personal use only. These photos are not authorized to be used for commercial purposes.