PLATINUM2023

ICP CARE CORP

Miami, FL   |  http://www.icpcare.org
GuideStar Charity Check

ICP CARE CORP

EIN: 46-5267610


Mission

ICP Care 501(c)(3) nonprofit charity's mission is to provide patient support and education, raise public awareness, support the advancement of research and improve health care practices. ICP Care helps to connect, support, educate and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy. We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals, and creating a supportive community for friends and families of anyone affected by ICP. We hope that, one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy, resulting in less suffering and healthier ICP babies.

Ruling year info

2016

CEO - Founder

Donna Benavides-Diaz

Main address

PO Box 12896

Miami, FL 33101 USA

Show more contact info

EIN

46-5267610

Subject area info

Health

Reproductive health care

Population served info

Adults

Women and girls

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Communication

Blog

What we aim to solve

SOURCE: Self-reported by organization

ICP Care supports patients and healthcare professionals with evidence-based information to help pregnant mothers who experience the high-risk pregnancy condition Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. There continues to be a disconnect with proper treatment and management of ICP. Many women continue to advocate to receive the active management needed during their ICP.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Awareness and Educate those affected by ICP – Intrahepatic Cholestasis of Pregnancy.

We raise awareness of the condition via the website, social network media networks, Facebook page and groups, distribute educational materials for patients and medical professionals, and attend 4 yearly Healthcare provider educational events with booth presence. We also create a supportive community for friends and families of anyone affected by ICP.

Population(s) Served
Adults
Women and girls

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Over 320,000 views 167,578 Visitors With over 166,000 of those being first time visitors

Number of downloads of the organization's materials and explanations

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Infographic: 1,409 Patient Brochure: 2,213 Healthcare Professionals Brochure: 1,152 Diagnosis & Treatment Flowchart: 788 Considerations After Pregnancy: 26

Hours of volunteer service

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Members in Facebook Support Groups

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Over 29,500 members 18,000 Public Support Group 6,000 Spanish Support Group 2,700 After Pregnancy (Postnatal Group) 50 State Support Groups

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We provide patient support and education, raise public awareness, support the advancement of research, and improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.

• Continuing Medical Education Programs development on ICP for Healthcare Providers
• Maintain the ICP Patient Registry to advance and support cholestasis of pregnancy treatment, management, and research
• Attend Healthcare professional’s education events with booth presence
• Raise awareness via Social Media Networks and Website Visitors
• Provide support Community Group Members
• Distribute education materials
• Support research

ICP Care distributes educational brochures and pamphlets to both patients and medical providers regarding Intrahepatic Cholestasis of Pregnancy. These educational materials provide the information needed to help an expectant mother or health care provider recognize the symptoms of ICP, test for the disorder, and ultimately treat and manage an ICP pregnancy. This information is presented in a succinct and easy-to-digest format and is available to the public at no cost on our website, www.icpcare.org

We manage the world's most visited charitable website on the condition. This website provides evidence-based information regarding ICP, with sections for both patients and providers, as well as links to all relevant supporting journal articles. Also included are links to healthy eating suggestions for pregnancy, “find a doctor” section, doctor discussion guides, educational brochures and many other self-help tools. The website receives over 5,000 unique views each week. Maintaining a visible and highly active social media presence, ICP Care promotes education and awareness of the condition through social media posts on Facebook, Twitter, Pinterest, Instagram and YouTube.

ICP Care promotes education through various media outlets, providing interviews for television, newspaper, and magazine articles. Many of our featured stories such as CNN iReport, What to Expect, Washington Post and Midwifery Today can be viewed by visiting our website: https://icpcare.org/about/news/

Each June, ICP Awareness month, ICP Care organizes and carries out awareness strategies through social media and other campaigns to bring discussion of the condition into public view. These campaigns may include, but are not limited to, educational material, banners, awareness videos, photographs, or other “shareable” social media posts, or any other social media campaign. We also provide documents for individual members to personalize to thank their doctors for their care or to contact local media outlets to raise additional awareness of the condition.

Healthcare Professional Conference / Meetings
In 2018 we attended 3 major healthcare provider conference meetings in the USA to distribute ICP Healthcare provider brochures and educate doctors, midwives and nurses. In 2019 we added the SMFM (Society of Maternal Fetal Medicine specialist) Annual Scientific Conference. In 2020 due to Covid attended SMFM. Returned in 2022 to attend AASLD The Liver meeting and in 2023 have attended SMFM's annual pregnancy meeting.
ICP Care sponsors and manages active and vibrant support groups for women and families impacted by ICP. These support groups are centered around Facebook social media. Support groups include a public group, a closed private group, a Spanish language and Postnatal forum, an In-Memory for support of families of pregnancy loss due to ICP, as well as many local group forums to connect and empower families affected by ICP, including, groups for Canada, Australia, and by state.

ICP Care manages the world's most visited charitable website on the condition.

ICP Care goals accomplished and continued goals:
• Collaborated to add ICP to Michigan State University's Maternal 911 Modules for Maternal Safety Program
• Launched and maintain the ICP Patient Registry to advance and support cholestasis of pregnancy treatment, management, and research
• Continued Goal for future Continuing Medical Education Programs development on ICP for Healthcare Professionals
• Attended (3) 2018 & (4) 2019 & (1) 2020 & (1) 2022 - Healthcare provider education events with booth presence, attended 1 so far in 2023
• Raise awareness: Over 320,000 website views in 2022
• Continue to grow our social media networks; in 2022, over 29,500 members in Facebook support groups, Instagram: 4670 followers, Twitter: 992 followers. YouTube has had over 51,000 views to date.
• Provide support 29,500 Community Group Members
• Distribute education materials for patients
• Goal to print and distribute in healthcare offices for patients
• Support research

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

ICP CARE CORP

Financial data

SOURCE: Self-reported by organization

ICP CARE CORP

Revenue & expenses

Fiscal Year: 2022

SOURCE: Self-reported by organization

Revenue
Contributions, Grants, Gifts $29,211
Program Services $0
Membership Dues $0
Special Events $16,342
Other Revenue $1,234
Total Revenue $46,787
Expenses
Program Services $39,800
Administration $7,300
Fundraising $915
Payments to Affiliates $0
Other Expenses $2,212
Total Expenses $50,226

ICP CARE CORP

Balance sheet

Fiscal Year: 2022

SOURCE: Self-reported by organization

Assets
Total Assets $0
Liabilities
Total Liabilities $0
Fund balance (EOY)
Net Assets $14,450

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Form 1023/1024 is not available for this organization

CEO - Founder

Donna Benavides-Diaz

I founded ICP Care in an effort to continue to improve awareness among people and the medical community. The journey through ICP began with my first pregnancy in 2003 with my son Jorden. My pregnancy was wonderful until my 33 week when I began with itchy symptoms. Please read My Life-Changing Experience with Cholestasis of Pregnancy story on What to Expect. https://icpcare.org/wp-content/uploads/2022/05/My-Life-Changing-Experience-with-Cholestasis-of-Pregnancy.pdf http://www.whattoexpect.com/wom/pregnancy/my-life-changing-experience-with-cholestasis-of-pregnancy.aspx There is a definite need to assist in the awareness of ICP as well as aiding others to seek the proper medical treatment that is vital for those health care specialists caring for women with Intrahepatic Cholestasis of Pregnancy. My goals continue by networking with those affected by the condition, researchers and medical healthcare specialists throughout the world.

There are no officers, directors or key employees recorded for this organization

There are no highest paid employees recorded for this organization.

ICP CARE CORP

Board of directors
as of 12/04/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board co-chair

Donna Benavides-Diaz

ICP Care


Board co-chair

Amparo Healey

ICP Care

Term: 2018 -

Lia McKernan

ICP Care

Laura Bonebrake

ICP Care

Kaitlan Terry

ICP Care

Elisabeth Naff

ICP Care

Carla Karp

ICP Care

Nicole Lorentz

ICP Care

Grace Abraham

ICP Care

Sara-Jayne Carcerano

ICP Care

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/22/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/14/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.