2022 Family Meeting Banner - #curekrabbe - KrabbeConnect

#curekrabbe Family Meeting

Join us for #curekrabbe Family Meeting on Saturday, June 25th at the Eaglewood Resort and Spa, in partnership with the United Leukodystrophy Family Conference, June 24th and 25th.

We’re thrilled to offer a half-day meeting to keep patients and caregivers abreast of important information, new programs and resources, industry updates, and valuable projects. This year, the #curekrabbe family meeting will take place in person in partnership with the United Leukodystrophy Foundation (ULF) Family Conference. What does this mean you might ask? Our board of directors believes in partnerships and the sharing of resources. ULF has an established family conference available to the Krabbe disease community and provides a meeting space central to attendees across the United States. At this conference, you will have the opportunity to connect with Krabbe disease families, researchers, and industry partners as well as other families impacted by leukodystrophy. If you decide to attend this meeting, rest assured, that you will leave this co-partnered family meeting with lots of connections, resources, and new ideas to help you continue to navigate your Krabbe disease journey.

#curekrabbe Family Meeting Details

Date: Saturday, June 25th, 2022
Start Time: 9:00 am CST
End Time: 12:30 pm CST

Cost of Lodging: $132/night plus tax

Lodging: Englewood Resort and Spa. Book your discounted room here

Dates of ULF Conference: Friday June 24th-Saturday, June 25th, 2022. Full ULF Conference details here

Where: Held in person as part of the United Leukodystrophy Foundation’s (ULF) Family Conference at Englewood Resort and Spa located in Itasca, IL.

PLEASE NOTE: Prior to Registering, please review the health and safety protocol of the ULF Family Conference by clicking here.

Register Now: Registration occurs through ULF. Registration for the #curekrabbe Family Meeting will also provide you access to the other sessions conducted by ULF. Register here now but stay tuned to Facebook, Twitter, and Instagram for the latest updates on this meeting. Please register with code word: KrabbeConnect.

Important Note: KrabbeConnect will cover the $25 suggested ULF donation for everyone impacted by Krabbe disease who registers. KrabbeConnect will also offer travel stipends to assist families with their travel needs. To apply for a travel stipend, please complete the form below no later than Monday, May 16^th, 2022 at 5:00 EST.

Meeting Agenda: Will be available by end of May, 2022

Travel Approval Form

"*" indicates required fields

1. INFORMATION ON APPLICANT

Name*

First Last

Email*

Address*

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

Has the applicant been approved for any KrabbeConnect Assistance programs before?*

Reason for assistance*

For Example, 1 working parent, the budget is unable to accommodate travel but interested in the meeting, etc.

Have you had the opportunity to attend any other Krabbe-related meeting/s in person?*

What other Krabbe-related meeting(s) have you attended in-person?

Traveler Details

Please list the name of all travelers and note if the individual is currently impacted by Krabbe disease.

Traveler 1: Name

First Last

Traveler 1: Relationship to Applicant

Traveler 1: Health Concerns

Please list any health concerns.

Is there an second traveler?

Traveler 2: Name

First Last

Traveler 2: Relationship to Applicant

Traveler 2: Health Concerns

Please list any health concerns.

Is there a third traveler?

Traveler 3: Name

First Last

Traveler 3: Relationship to Applicant

Traveler 3: Health Concerns

Please list any health concerns.

KrabbeConnect works to provide several families with the opportunity to attend. Many of the meals are already covered by KrabbeConnect or ULF.

Would you be able to attend if you were granted a partial travel scholarship?

How much funding would you personally be able to contribute towards the travel costs?

Would you require air travel to get to the meeting?*

What airport do you would need to fly out of?

Cost of Proposed Travel

Please help us understand the cost of your travel to this meeting

Lodging Cost 24th -26th at $132/night: $300. Do you need assistance with this cost?

Are you flying on an airline to get to the meeting?

Estimated total airline cost

Estimated baggage cost

If you’re not flying, the total estimated gas cost:

Other costs KrabbeConnect may not be informed about impacting your travel:

Estimated Overall Total (add all the lines above together):

Consent*

I hereby agree to apply for travel assistance for the 2022 #curekrabbe Family meeting. By signing below, I agree to attend the entire #curekrabbe family meeting and if I am unable to do so, the applicant agrees to return the approved stipend funds minus to assist another applicant.

Signature

Name

First Last

Comments

This field is for validation purposes and should be left unchanged.

#curekrabbe Family Meeting

Join us for #curekrabbe Family Meeting on Saturday, June 25th at the Eaglewood Resort and Spa, in partnership with the United Leukodystrophy Family Conference, June 24th and 25th.