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CureDuchenne

 1400 Quail Street, #110
 Newport Beach, CA 92660
[P] (949) 872-2552
[F] (949) 872-2568
www.cureduchenne.org
www.CureDuchenneCares.org
[email protected]
Debra Miller
FOUNDED: 2003
INCORPORATED: 2003
 Printable 1 Page Summary
 Printable Profile
Organization DBA --
Former Names --
Organization received a competitive grant from the community foundation in the past five years No
Employer Identification Number 20-0299958 00000

Summary


Mission StatementMORE »

CureDuchenne is the leading nonprofit that funds research to find a cure for Duchenne muscular dystrophy. Our mission is to extend and save the lives of those affected with Duchenne.  We find and fund the best research and educate the Duchenne community about best care practices.

Mission Statement

CureDuchenne is the leading nonprofit that funds research to find a cure for Duchenne muscular dystrophy. Our mission is to extend and save the lives of those affected with Duchenne.  We find and fund the best research and educate the Duchenne community about best care practices.

FinancialsMORE »

Fiscal Year 2017
Projected Expenses $2,000,000.00
Projected Revenue $2,000,000.00

ProgramsMORE »

  • Research
  • CureDuchenne Cares

Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

Expense Breakdown 2013 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview


Mission Statement

CureDuchenne is the leading nonprofit that funds research to find a cure for Duchenne muscular dystrophy. Our mission is to extend and save the lives of those affected with Duchenne.  We find and fund the best research and educate the Duchenne community about best care practices.

Background Statement

CureDuchenne was founded by Paul and Debra Miller in 2003 after their son was diagnosed with Duchenne muscular dystrophy. The Millers applied their professional backgrounds to create a fiscally responsible and strategically focused business model.  They assembled a seasoned staff, including a Chief Scientific Advisor and VP of Medical and Scientific Affairs, and an expert Scientific Advisory Board, to lead the charge for a cure.  Today, CureDuchenne is the national leader in funding research to find a cure for Duchenne.

Impact Statement

In 2016, the first ever drug was approved by the FDA for the treatment of Duchenne. CureDuchenne was an early supporter of this research.  Nine research projects have advanced into human clincial trials with support from CureDuchenne. This accelerated push to move research from the lab into clincial trials could save the lives of those afflicted with Duchenne and give them hope for halting the progress of the disease.  Very few health-related nonprofits have been as successful in being a catalyst for human clinical trials.

Needs Statement

CureDuchenne Ventures is the investment arm of CureDuchenne. CureDuchenne's Venture impact fund relies on philanthropic support from generous donors and the Duchenne community. CureDuchenne Ventures provides funding to early-stage companies to de-risk science and create an ecosystem that drives additional investments from VC, biotech and pharma partners.  CureDuchenne Ventures' mission is to find and fund treatments tht can be used to treat all those impacted by Duchenne.  Our robust pipeline of therapies to treat Duchenne comes from a diverse array of cutting edge technologies used to treat all aspects of Ducehnne including dystrophin replacement, cardiac failure, respiratory failure, and fibrosis.  CureDuchenne needs to raise $5 million to advance the treatment of Duchenne. 

 
 

CEO Statement

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Board Chair Statement

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Other Ways to Donate/Volunteer

Supporters can donate online at www.cureduchenne.org or by mailing a check to CureDuchenne, 1400 Quail Street, #110, Newport Beach, CA  92660.
 
We also looking for venture philanthropists, grants, Program Related Investments and corporate sponsors.  For more information call 949-872-2552. 

Geographic Area Served

Central Orange County
West Orange County
South Orange County
North Orange County
CureDuchenne is a national nonprofit based in Newport Beach, CA.

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Nerve Muscle & Bone Diseases
  2. Medical Research - Fund Raising & Fund Distribution
  3. -

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Programs


Research

Duchenne muscular dystrophy is a multi-faceted, complex disease.  CureDuchenne is working to treat the whole disease with a multi-pronged approach to find treatments for the many effects that Duchenne has on the body.  CureDuchenne is funding research that addresses gene therapy, anti-fibrosis/anti-inflammatory and cardiac function, the leading cause of death for those with Duchenne.
 
CureDuchenne is currently funding a gene editing project utilizing gene editing technologies like CRISPR/Cas9 to advance the development of a treatment for Duchenne muscular dystrophy. Exonics’ CRISPR/Cas9 technology is a potential one-time treatment that would make a permanent correction of the mutation that causes Duchenne.

 

Exonics Therapeutics will use proceeds from the seed financing to advance the preclinical research of its scientific founder and chief science advisor Eric Olson, PhD, to a clinic-ready therapy. Dr. Olson’s laboratory has demonstrated the ability to use adeno-associated virus (AAV) to deliver a payload based on CRISPR/Cas9 technology that can identify and correct exon mutations that prevent the production of dystrophin, a protein that helps stabilize and protect muscle fibers. Dystrophin is the key protein missing in boys with Duchenne, and published preclinical data suggest that this approach has the potential to permanently treat up to 80 percent of children suffering from Duchenne.
Budget  $2,500,000.00
Category  Medical Research, General/Other Muscular Dystrophy Research
Population Served Other Health/Disability
Program Short-Term Success 
Accelerate drug development to help bring research to human clinical trials. 
Program Long-Term Success  Potential therapy to extend length and quality of life of those afflicted with Duchenne muscular dystrophy.
Program Success Monitored By 
VP of Medical and Scientific Affairs will monitor milestones.
Examples of Program Success  --

CureDuchenne Cares

CureDuchenne Cares is a physical therapy, education and outreach program for the Duchenne muscular dystrophy community to help provide consistent standard of care for Duchenne patients.  The main goals of the CureDuchenne Cares program are to: improve outcomes, extend ambulation and provide guidance on disease management and care.  
 
 
This vital program aims to give parents, family members, caregivers, physical therapists and other professionals working with those with Duchenne the information and resources they need to keep their loved ones as healthy as possible so that they can benefit from treatments once they become available. 
 
CureDuchenne Cares provides free workshops on Duchenne muscular dystrophy for parents, family members and caregivers.  CureDuchenne Cares also provides full-day continuing education courses for physical therapists and other health professionals to help improve the treatment and outcomes for their clients with Duchenne. The CureDuchenne Cares team travels around the country to provides this hands-on, interactive sessions in local communities.  The workshops also include information on research and clinical trials. 
Budget  $500,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Muscular Dystrophy
Population Served Other Health/Disability
Program Short-Term Success  Keep Duchenne patients as healthy as possible so they can benefit from approved treatments once they become available.
Program Long-Term Success  Find an approved treatment and cure for Duchenne muscular dystrophy.
Program Success Monitored By 
Evaluations of workshops and testimonials from families, caregivers and health professionals.
 
Examples of Program Success 
In 2015, CureDuchenne Cares conducted 7 workshops with an average of 25 family members and 23 professionals (with each professional serving three Duchenne patients).
 
Here are some parent testimonials:
"CureDuchenne definately cares.  We gained so much knowledge and expertise from the session as parents.  Thank you CureDuchenne Cares for coming and helping us improve the care of our boys."
 
"Learning in person where you can ask questions is invaluable.  It was great to be able to attend a workshop that was closer to home.  Being in a group of people who are experiencing similar journeys also helps us know that we are no alone in ours."
 
"To all Duchenne families, I would highly recommend that you attend a CureDuchenne Cares workshop.  The information and support there is priceless.  From clinical trials to physical therapy, it was all covered. 
 
 
In 2016 increasing the number of sessions to 12

Management


CEO/Executive Director Ms. Debra Miller
CEO Term Start 2003
CEO Email [email protected]
CEO Experience Debra Miller is co-founder and president of CureDuchenne.  She and her husband started the organization in 2003 after their only son, Hawken, was diagnosed with Duchenne.  Miller, a native Californian, earned a Bachelor of Arts in Communication Studies from the University of California – Los Angeles. Prior to CureDuchenne, Miller had a career in publishing with positions at IDGCommunications, Cahners Publishing, Ziff-Davis Publishing and ScholasticPublishing.  She also worked inmanagement at PC Magazine and was an independent stock trader.

Former CEOs and Terms

Name Start End
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Senior Staff

Name Title Experience/Biography
Mrs. Karen Harley Vice President of Marketing Communications --
Dr. Michael Kelly Ph.D. Chief Scientific Officer --
Dr. Jak Knowles Vice President of Medical and Scientific Affairs --
Mrs. Debra Miller President, Co-Founder --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

CureDuchenne collaborates with researchers, academic institutions and other Duchenne organizations

Staff Information

Number of Full Time Staff 10
Number of Part Time Staff 0
Number of Volunteers 15
Number of Contract Staff 3
Staff Retention Rate % --
Staff Professional Development Yes

Staff Demographics

Ethnicity African American/Black: 2
Asian American/Pacific Islander: 1
Caucasian: 7
Hispanic/Latino: --
Native American/American Indian: --
Other: --
Other (if specified): --
Gender Female: 9
Male: 1
Not Specified --

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Under Development
Years Strategic Plan Considers --
Management Succession Plan No
Organization Policies And Procedures Yes
Business Continuity of Operations Plan --

Risk Management Provisions

Nondiscrimination Policy Under Development
Whistle Blower Policy No
Document Destruction Policy Yes
Directors and Officers Insurance Policy Yes

Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency Yes --
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Government Licenses

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CEO Comments

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Foundation Comments

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Governance


Board Chair Jeff Goffman
Board Chair Company Affiliation Integrated Oncology Network, LLC
Board Chair Term Dec 2011 - Dec 2015
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
George Blank Former CFO of Univision Voting
Kevin Dorsey ICON Voting
TJ Farnsworth SightLine Health, LLC Voting
Jeffrey A. Goffman Integrated Oncology Network, LLC Voting
Debra Miller CureDuchenne Voting
Paul Miller Go Fit Foods Voting
Ron Philip Pfizer Global Innovative Pharmaceuticals Voting
Tom Scranton Patriot Environmental Services Voting
Evonne Sepsis ESC Advisors Voting
Stephen Spivak -- Voting
Ryan Williams Athletes First Voting
Elaine Wu WHGC, P.L.C. Voting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Additional Board Members and Affiliations

Name Company Affiliations Status
Barry Byrne M.D., Ph.D University of Flordia, School of Medicine --
Kevin Campbell Ph.D University of Iowa, Carver College of Medicine --
Jeffrey Chamberlain Ph.D University of Washington School of Medicine --
Eric Hoffman Ph.D. Children's National Medical Center Washington DC --
Edward Kaye M.D. Sarepta Therapeutics --
Douglas Macdonald Ph.D. CHDI Management, Inc. --
Kannebovina Nagaraju Ph.D. Children's National Medical Center --
Pier Lorenzo Puri M.D., Ph.D. Sanford-Burnham Medical Research Institute --
Thomas Rando M.D., Ph.D. Stanford University School of Medicine --

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 1
Caucasian: 12
Hispanic/Latino: 0
Native American/American Indian: 0
Other: --
Other (if specified): --
Gender Female: 3
Male: 9
Not Specified 0

Board Information

Board Term Lengths 2
Board Term Limits 0
Board Meeting Attendance % 85%
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 100%
Percentage of In-Kind Contributions --
Board Orientation Yes

CEO Comments

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Foundation Comments

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Standing Committees

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Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

Expense Breakdown 2013 (%)

Fiscal Year Jan 01, 2017 to Dec 31, 2017
Projected Revenue $2,000,000.00
Projected Expenses $2,000,000.00
Form 990s

2015 CureDuchenne 990

2014 CureDuchenne 990

2013 CureDuchenne 990

Audit Documents

2015 CureDuchenne Audited Statement

2014 CureDuchenne Audit Statement

2013 CureDuchenne Audit Statement

IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2015 2014 2013
Total Revenue $1,902,106 $4,052,797 $1,875,303
Total Expenses $2,518,144 $1,546,811 $1,956,413

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2015 2014 2013
Foundation and
Corporation Contributions
$825,480 $3,968 --
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified $0 $0 --
Individual Contributions -- -- --
Indirect Public Support $0 $0 --
Earned Revenue $0 $0 --
Investment Income, Net of Losses $18,688 $22,594 $41,362
Membership Dues $0 $0 --
Special Events $859,490 $1,514,198 $1,773,951
Revenue In-Kind $0 $3,968 $59,990
Other $-35,615 $-197,771 --

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2015 2014 2013
Program Expense $1,929,887 $1,188,023 $1,427,535
Administration Expense $177,042 $135,749 $137,904
Fundraising Expense $411,215 $223,039 $390,974
Payments to Affiliates $0 $0 --
Total Revenue/Total Expenses 0.76 2.62 0.96
Program Expense/Total Expenses 77% 77% 73%
Fundraising Expense/Contributed Revenue 24% 15% 22%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2015 2014 2013
Total Assets $6,440,098 $7,112,452 $2,803,555
Current Assets $3,183,823 $2,879,455 $2,803,555
Long-Term Liabilities $165,805 $69,394 --
Current Liabilities $0 $0 $40,898
Total Net Assets $6,274,293 $7,043,058 $2,762,657

Short Term Solvency

Fiscal Year 2015 2014 2013
Current Ratio: Current Assets/Current Liabilities inf inf 68.55

Long Term Solvency

Fiscal Year 2015 2014 2013
Long-term Liabilities/Total Assets 3% 1% 0%
Endowment Value --
Spending Policy --
Percentage(If selected) --
Are you currently in a Capital Campaign? Yes
Capital Campaign Purpose CureDuchenne Ventures is a new initiative to identify and fund a robust pipeline of life extending therapies to treat Duchenne.
Campaign Goal $5,000,000.00
Capital Campaign Dates Jan 2017 - Sept 2020
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

CEO Comments

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Foundation Comments

Summary financial data is per the audited financial statements, form 990s and consultation with the organization. Foundation/corporate and individual contributions are combined under Foundation and Corporation Contributions.