#curekrabbe Family Conference

Where Families Impacted by Krabbe disease Can Connect, Share, and Learn

KrabbeConnect will be hosting our first in-person #curekrabbe Family Conference in Tampa Florida

Location: Westin Tampa Waterside, 725 South Harbour Island Boulevard

What you can expect from the conference:

This family conference will feature scientific, advocacy, and family support sessions. The Family Conference will take place April 21^st-23^rd, 2023. This Krabbe disease Family Conference is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease. A detailed agenda is forthcoming.

Frequently Asked Questions

How much will it cost our family?

Each family will be required to pay a $35 non-refundable registration fee.

For families directly impacted by Krabbe disease (living or no longer living) KrabbeConnect can cover the hotel and travel costs for those needing assistance. Grandparents or other family/friends are welcome to attend but they will need to cover their own hotel and travel costs unless they are part of the caregiver team. KrabbeConnect’s financial resources for airfare/gas/room costs are limited to two parents/caregivers, and any child/adult living with Krabbe disease.

What is the cost of the rooms?

Each standard room will cost $279/night plus applicable state and local taxes (currently 13.5%). KrabbeConnect will cover your 3-night room stay for the #curekrabbe Family Conference. However, if you’re able to share any of the costs, please let us know. This allows KrabbeConnect’s resources to reach more families for this conference.

Should you decide to extend your stay, this will be at your own expense. All hotel room incidentals will also be the responsibility of the attendee/s.

Is airfare or gas reimbursable?

Is food provided or covered?

Who can attend the conference?

Will you offer sibling care?

Will I be required to wear a mask?

KrabbeConnect invites families to utilize a mask at their discretion. If you have a condition that weakens your immune system or you take certain medications, you may need to take extra precautions or consult with your doctor before attending. KrabbeConnect encourages you and everyone you love, care for or care about, to be respectful of others while in attendance at the #curekrabbe Family Conference.

Should I reserve my plane ticket on my own?

I do not require financial assistance to attend this meeting.

Great! Please complete the “Reserve Your Spot Now” form below so we effectively manage the number of attendees at the 2023 #curekrabbe Family Conference. If you require airline travel, please feel free to book your flights at your convenience. KrabbeConnect recommends booking 2-3 months in advance of the conference dates to secure cost-friendly airline tickets. KrabbeConnect will be responsible for reserving all hotel rooms.

RESERVE YOUR SPOT NOW BY PAYING YOUR NON-REFUNDABLE FEE OF $35.00. RESERVATIONS ARE ON A FIRST COME FIRST SERVE BASIS --- WE WILL REACH CAPACITY FOR THE #CUREKRABBE FAMILY CONFERENCE!

2023 Annual Conference Registration Form

Your Name(Required)

First Last

Your Email (the best email to connect with you)(Required)

Your Phone (the best number to reach you)(Required)

Your Mailing Address(Required)

Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country

Information about your connection to Krabbe disease

Name(s) of Individual(s) Living with Krabbe disease

Name(s) of Individual(s) No Longer Living with Krabbe disease

Who is attending the conference?

How many individuals will be attending the conference?(Required)

Guest #1: Name(Required)

First Last

Guest #1: Relationship to Individual Impacted by Krabbe disease(Required)

T-Shirt Size(Required)

Guest #2: Name(Required)

First Last

Guest 2: Relationship to Individual Impacted by Krabbe disease(Required)

T-Shirt Size(Required)

Guest #3: Name(Required)

First Last

Guest 3: Relationship to Individual Impacted by Krabbe disease(Required)

T-Shirt Size(Required)

Guest #4: Name(Required)

First Last

Guest 4: Relationship to Individual Impacted by Krabbe disease(Required)

T-Shirt Size(Required)

Registration Fee

Fee per Family / Form

Price:

Credit Card(Required)

American Express

Discover

MasterCard

Visa

Card Number

Expiration Date

Security Code Cardholder Name

Financial aid

Will anyone in your group require financial assistance to atend the #curekrabbe Family Conference?(Required)

How will you be traveling to the event?(Required)

Disclaimer and Consent(Required)

I agree

I am a legal guardian and can speak on behalf of the individuals listed on this form. I understand that I will be charged a $35 non-refundable fee to attend the #curekrabbe Family Conference.
In conjunction with the #curekrabbe Family Conference I also hereby grant KrabbeConnect (the “Foundation”) the irrevocable right and permission to use photographs and/or video recordings of the above listed individuals on KrabbeConnect.org, social media channels (Facebook, Instagram, Twitter, LinkedIn), publications, promotional flyers, educational materials, derivative works, or for any other similar purpose without compensation to me or others listed below.

I understand and agree that such photographs and/or video recordings of me may be placed on the Internet. I also understand and agree that I may be identified by name and/or title in printed, Internet or broadcast information that might accompany the photographs and/or video recordings of me. I waive the right to approve the final product. I agree that all such portraits, pictures, photographs, video and audio recordings, and any reproductions thereof, and all plates, negatives, recording tape and digital files are and shall remain the property of KrabbeConnect.

I hereby release, acquit, and forever discharge KrabbeConnect, its current and former board of trustees, agents, officers and employees of the above-named entities from any and all claims, demands, rights, promises, damages and liabilities arising out of or in connection with the use or distribution of said photographs and/or video recordings, including but not limited to any claims for invasion of privacy, appropriation of likeness or defamation.

I hereby warrant that I am eighteen (18) years old or more and competent to contract in my own name or, if I am less than eighteen years old, that my parent or guardian has signed this release form below. This release is binding on me and my heirs, assigns and personal representatives.

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2023 Annual Conference

#curekrabbe Family Conference

Where Families Impacted by Krabbe disease Can Connect, Share, and Learn

Frequently Asked Questions

RESERVE YOUR SPOT NOW BY PAYING YOUR NON-REFUNDABLE FEE OF $35.00. RESERVATIONS ARE ON A FIRST COME FIRST SERVE BASIS --- WE WILL REACH CAPACITY FOR THE #CUREKRABBE FAMILY CONFERENCE!

2023 Annual Conference Registration Form

Information about your connection to Krabbe disease

Who is attending the conference?

Registration Fee

Financial aid

Contact Us

OUR VISION

Newly Diagnosed

Patients & Caregivers

Research & Education

#curekrabbe Family Conference

Where Families Impacted by Krabbe disease Can Connect, Share, and Learn

Frequently Asked Questions

RESERVE YOUR SPOT NOW BY PAYING YOUR NON-REFUNDABLE FEE OF $35.00. RESERVATIONS ARE ON A FIRST COME FIRST SERVE BASIS --- WE WILL REACH CAPACITY FOR THE #CUREKRABBE FAMILY CONFERENCE!

2023 Annual Conference Registration Form

Information about your connection to Krabbe disease

Who is attending the conference?

Registration Fee

Financial aid

Join Our Mailing List

Contact Us

OUR VISION

Newly Diagnosed

Patients & Caregivers

Research & Education