Krabbe Connect

Organization Overview

Krabbe Connect is located in Rosemount, MN. The organization was established in 2018. According to its NTEE Classification (G30) the organization is classified as: Cancer, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Krabbe Connect is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Krabbe Connect generated $149.5k in total revenue. This represents relatively stable growth, over the past 3 years the organization has increased revenue by an average of 3.7% each year. All expenses for the organization totaled $70.8k during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

KRABBECONNECT WILL BE THE SOURCE OF COMPREHENSIVE INFORMATION AND ACCESS TO RESOURCES FOR FAMILIES WITH KRABBE DISEASE.

Describe the Organization's Program Activity:

Part 3 - Line 4a

PATIENT ENGAGEMENT: PROVIDING INFORMATION AND RESOURCES FOR KRABBE DISEASE THROUGH KRABBECONNECT WEBSITE, FACEBOOK, AND SOCIAL MEDIAL CHANNELS. ENGAGEMENT WITH FAMILIES AFFECTED BY THE DISEASE BY OFFERING SUPPORT AND CONNECTIONS FOR MANAGING CARE OF THE PATIENTS. RESOURCES INCLUDE CONTACT INFORMATION FOR CLINICAL EXPERTS, EXPERTS IN RESEARCH, CURRENT RESEARCH LITERATURE VIA THE RESOURCE LIBRARY, AND OPPORTUNITIES FOR CLINICAL TRIALS IN THE DISEASE SPACE. KRABBECONNECT ALSO INTERACTS WITH THE COMMUNITY THROUGH OUR INTERNATIONAL LIAISON, OUTREACH DIRECTOR AND PATIENT ENGAGEMENT MANAGER.


PATIENT ADVOCACY AND ADVANCEMENT: BOARD MEMBERS ROUTINELY ATTEND CONFERENCES AND MEETINGS THAT INVOLVE THE RARE DISEASE COMMUNITY TO SUPPORT THE NEEDS OF THE KRABBE PATIENTS AND THEIR FAMILIES. KRABBECONNECT ALSO PARTICIPATES IN NETWORKING OPPORTUNITIES WITH OTHER ADVOCACY FOUNDATIONS JOINING TOGETHER TO HAVE A VOICE FOR THE PATIENTS. KRABBECONNECT MAINTAINS MEMBERSHIP WITH SEVERAL LARGE ORGANIZATIONS, I.E. NORD, GLOBAL GENES, ULF, WORLD LYSOSOMAL STORAGE DISEASE TO ENHANCE THE ADVOCACY AND EDUCATION OF KRABBE DISEASE.


RESEARCH AND DEVELOPMENT: KRABBECONNECT PRODUCED A POSTER TO DISCUSS THE PATIENT BURDEN OF KRABBE DISEASE. RESEARCH CONDUCTED TO COLLECT DATA FROM PATIENTS TO CAPTURE THE UNMET NEEDS IN THE KRABBE COMMUNITY. THE RESEARCH WILL SERVE AS A TOOL TO CLINICIANS, SCIENTISTS, RESEARCHERS, AND INDUSTRY TO HELP WITH THE ADVANCEMENT OF NEW NOVEL TREATMENTS IN THE KRABBE DISEASE SPACE. KRABBECONNECT IS WORKING TO CREATE A PATIENT REGISTRY AND PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FDA TO SUPPORET RESEARCH AND ADVANCEMENTS IN TREATING KRABBE DISESASE.


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Board, Officers & Key Employees

Name (title)Compensation
Anne Rugari
Treasurer
$16,400
Stacy Pike Langenfeld
President
$0
Wendy Zielen
Secretary
$0
David Cooper
Director
$0
Megan Renze
Legal Advisor
$0
Dawn Laney
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$154,531
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$23,667
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$178,198
Total Program Service Revenue$0
Investment income $0
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events -$28,734
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $149,464

Grants Recieved

Over the last fiscal year, we have identified 2 grants that Krabbe Connect has recieved totaling $10,204.

Awarding OrganizationAmount
Saint Paul & Minnesota Foundation

Saint Paul, MN

PURPOSE: MULTIPLE GRANTS FOR MULTIPLE PURPOSES

$10,000
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$204
View Grant Recipient Profile

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