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Muscular Dystrophy Association

 5836 Corporate Avenue, Suite 110
 Cypress, CA 90630
[P] (714) 245-0921
[F] (714) 245-0945
http://www.mda.org
http://www.facebook.com/MDAGreaterOC
[email protected]
Ashley Cunningham
FOUNDED: --
INCORPORATED: 1950
 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 13-1665552 00000

Summary


https://www.youtube.com/watch?v=0CcNL4cR36E

Mission StatementMORE »

The Muscular Dystrophy Association of Orange County is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases; caring for individuals from day one; and empowering families with services and support in hometowns across Orange County.

Mission Statement

The Muscular Dystrophy Association of Orange County is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases; caring for individuals from day one; and empowering families with services and support in hometowns across Orange County.

FinancialsMORE »

Fiscal Year 2016
Projected Expenses $87,753.00
Projected Revenue $1,373,458.00

ProgramsMORE »

  • Summer Camp
  • Family Care Centers
  • Loan Closet
  • Support Groups
  • Muscle Walk

Revenue vs. Expense ($000s)

Expense Breakdown 2013 (%)

Expense Breakdown 2012 (%)

Expense Breakdown 2011 (%)

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


Overview


Mission Statement

The Muscular Dystrophy Association of Orange County is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases; caring for individuals from day one; and empowering families with services and support in hometowns across Orange County.

Background Statement

In June 1950, Paul Cohen, a prominent New York business leader living with muscular dystrophy, invited a group of individuals to meet in his Rye, New York, office. Each had a personal connection to muscular dystrophy, and the gathering focused on the urgent need to raise funds to advance research seeking treatments and cures for muscular dystrophy. The group — so vested in the fight against neuromuscular diseases — formed the organization that became the Muscular Dystrophy Association. That year, MDA’s first research grant for $1,500 was awarded to neuromuscular disease pioneer Ade. T. Milhorat, M.D. Today, MDA is more committed than ever to accelerating treatments and cures for muscle-debilitating diseases and helping kids and adults live longer and grow stronger. Through nationwide events in hometowns across America, the generosity of donors and corporate partners and our new Live Unlimitedmovement that rallies Americans to champion our important cause once again, we will create a world where families are free from the harm of these devastating diseases.

Impact Statement

Our Impact

Families are at the heart of MDA's mission. We wake up every morning to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. We do this by finding research breakthroughs across diseases, caring for kids and adults from day one and empowering families with services and support in hometowns across America.

MDA is using the money we raise to accomplish the following goals by 2020:

  • CURE: Double our research investment on drug development and clinical trials to bring more treatments and cures to families.

  • CARE: Provide care and support for 50,000 more families — a 50 percent increase over the number of families registered with MDA today.

  • CHAMPION: Fund 20,000 kids at MDA Summer Camp at no cost to families as we expand our offerings for young adults.

Here are the ways we’re helping achieve these goals so families can live longer and grow stronger:

Cure: Finding research breakthroughs across diseases to accelerate treatments and cures.

At MDA, we take a big-picture perspective across the full spectrum of neuromuscular diseases to uncover breakthroughs that accelerate treatments and cures. The power in our research approach is that we can often apply learnings from one disease to achieve progress in others to bring urgently needed answers to our families.

  • MDA is currently funding about 200 research projects in 12 countries.
  • In 2015, MDA awarded 84 research grants with a total funding commitment of more than $21.5 million.
  • Every day, MDA invests $75,000 in research to find breakthrough treatments and cures across diseases.
  • This year, dozens of clinical trials are in progress thanks in part to MDA’s long-term research investments.

Care: Caring for kids and adults from day one.

We know that early diagnosis, highly specialized care and access to promising clinical trials help ensure the best possible outcomes for individuals and families facing muscular dystrophy, ALS and related life-threatening diseases. That’s why MDA is here to provide care for kids and adults from day one. Our MDA Care Centers offer families best-in-class, comprehensive care from a wide variety of health care specialists at one location on the same day, while our trained information specialists and educational resources are available to offer guidance and support through every step of the journey.

  • MDA has more than 150 Care Centers across the United States and in Puerto Rico located at top hospitals and health care facilities.
  • There were nearly 50,000 visits to our MDA Care Centers in 2015.
  • MDA brings together nearly 450 neuromuscular disease clinicians and experts every other year at our annual Clinical Conference to drive the best outcomes and care for families today.

Champion: Empowering families with services and support in hometowns across America.

MDA is here for our families in hometowns across America to empower the kids and adults we serve. From offering support groups and educational seminars that help caregivers, parents and individuals through their journey — to assisting families with durble medical equipment to maintain independence — to giving kids with muscular dystrophy the best week of the year at MDA Summer Camp, MDA is here to help families maintain and improve their health while actively pursuing education, passions, careers, dating, marriage and other goals associated with living independently.

  • More than 3,800 kids received the best week of the year at no charge to their families at MDA Summer Camp in 2015. MDA hosts nearly 75 summer camps across the country annually.
  • Every month, about 300,000 unique visitors come to mda.org to find the information and resources they need — that’s about 3.6 million people a year.
  • MDA provided more than 140 support groups, including 1,200 different sessions, in hometowns across America during 2015.

Needs Statement

MDA provides vital services to maintain the health and independence of persons affected by muscle disorders while MDA-supported researchers seek treatments or cures for those diseases.  The services we provide consists of diagnostic and follow up care at some 240 hospital-affiliated MDA clinics nationwide; physical, occupational, and respiratory therapy consultations; support group programs; assistance with the repair of wheelchairs, leg braces and communication devices; summer camps for over 4,000 children and much more.

CEO Statement

From MDA CEO, Steve Derks:

At MDA, we are beginning 2016 with families at the heart of our mission – literally. The heart in the middle of our refreshed logo symbolizes the kids and adults living with muscular dystrophy, ALS and related life-threatening diseases we fight for every day. We also begin the year with new offerings and enhancements to help the families we serve live longer and grow stronger.

This year, you will see a number of new and improved services to help provide better care and accelerate progress for our families:

  • This spring, we will introduce our first national MDA Family Resource Center that individuals can call to obtain one-on-one information and support from MDA specialists. From providing disease-specific information to assistance with finding local resources, we will be here to guide families through every step of their journey.
  • We will add to the more than $1 billion we’ve invested to date in research aimed at accelerating therapy development.
  • We will implement enhanced standards of care at all MDA Care Centers (formerly known as MDA Clinics), because early diagnosis, highly specialized care and access to promising clinical trials help ensure the best possible outcomes for families.
  • We are evaluating our offerings for teens and young adults and plan to improve and expand support for individuals transitioning into adulthood and living independently.
  • After surveying thousands of families, supporters and Americans, we have launched a revitalized MDA brand reflective of the needs and desires you have told us you want and expect from MDA.

This summer, we will launch a new campaign called Live Unlimited to unite consumers, companies and everyday Americans to help MDA families break free of limits.

While focused on finding urgent solutions today, we also have a long-term plan to fuel future discovery and impact. With a new strategic plan in place, we intend to achieve the following mission goals for our families by 2020:

  1. CURE: Double our research spend on drug development and clinical trials to bring more treatments and cures to families.
  2. CARE: Provide care and support for 50,000 more families — a 50 percent increase over the number of families registered with MDA today.
  3. CHAMPION: Fund 20,000 kids at MDA Summer Camp at no cost to families as we expand our offerings for young adults.

Our families inspire us every day as they break down barriers with remarkable can-do spirits — whether it’s crossing the street in a wheelchair, graduating from college or even skydiving. The courage our families show in defying limits is the inspiration behind MDA’s revitalized brand.

I’m also proud to announce that Joe Akmakjian, a 24-year-old marketing specialist in Fort Collins, Colorado, and MDA volunteer extraordinaire, will serve as MDA’s National Goodwill Ambassador and family spokesman for 2016. This is the first time in our history a young adult is in this role, marking a new era in our work and signifying the progress we are making together.

Thank you for your passion and partnership as we work together for strength, independence and life, as it says in our new tagline. I’m thrilled to be working together with you as we pursue our goals of freeing kids and adults from the harmful effects of muscular dystrophy and muscle-debilitating diseases. And I know with your help, one day, we will eradicate these diseases altogether.


Board Chair Statement

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Other Ways to Donate/Volunteer


 You can donate your time and volunteer at our Muscle Walk, Summer Camp, Fill the Boots, Holiday Parties...the opportunities are endless! We are always actively seeking in-kind donations to support our fundraising events.


Geographic Area Served

Throughout the United States
Central Orange County
West Orange County
South Orange County
North Orange County
2,000+ individuals and families living in Orange County and Inland Empire, CA.

Organization Categories

  1. Medical Research - Nerve Muscle & Bone Diseases Research
  2. Medical Research - Nerve Muscle & Bone Diseases Research
  3. -

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Programs


Summer Camp

MDA Summer Camp provides thousands of kids with muscular dystrophy and related muscle-debilitating diseases "the best week of the year." At MDA Summer Camp, kids are living beyond limits in a place where anything is possible. It's a week where they’re free to enjoy adventures like horseback riding, swimming and fishing, develop lifelong friendships, and build self-confidence and independence.

MDA Summer Camp offers a fun and safe outdoor experience, along with opportunities to engage in a variety of activities such as adaptive sports, arts and crafts, camp dances and much more. In addition to all of the fun and friendship it offers, MDA Summer Camp enables campers to stretch their comfort zones and grow in independence as they spend a week away from home and permit someone other than their parents to provide personal care. Sure, there’s an abundance of fun and games at camp, but if you talk to MDA campers, they’ll tell you the real benefits come in a much subtler form — the lifelong friendships, the increased self-esteem and confidence, and the chance to spend at least one week of the year in a place where physical disabilities are the norm rather than the exception.

For parents and guardians, MDA camp provides a brief break from their roles of caregiver for a child with neuromuscular disease. It's a place where parents know they can send their children for a week of summer fun and, at the same time, be assured that their child’s medical and physical needs will be met by a team of dedicated health professionals and trained camp volunteers. MDA staff and volunteers assume all camper care, including physical and emotional support, allowing parents much-needed time to attend to their own needs and, in some cases, spend some special time with the camper’s siblings.

Budget  $81,915.00
Category  Youth Development, General/Other Youth Development, General/Other
Population Served Children Only (5 - 14 years)
Program Short-Term Success  We are looking to increase our camp from one week to two weeks in the next year. This will also come with an increase in campers from 120 to 240. We are also looking at ways to recruit amazing volunteers that are willing to return to camp year after year. We currently have a great base of volunteers that attend camp each year and they are instrumental in us increasing our volunteer numbers in the upcoming years.
Program Long-Term Success  As camp is a national program, we plan to increase the number of campers nation-wide from 3,800 to 20,000. Which means locally we are looking to increase camp from one week of 120 campers to 5 weeks of camp with a total of 600 campers coming through our summer camp program annually.
Program Success Monitored By 

a. Staci Lane, Camp Director

Examples of Program Success  We continue year after year to increase the number of campers that we have in attendance. We also have a great base of volunteers that attend camp each year who have been instrumental in us increasing our volunteer’s numbers each year.

Family Care Centers

Our MDA Care Centers offer families best-in-class, comprehensive care from a wide variety of health care specialists at one location on the same day. We locally have 4 MDA Care Centers who utilize a multidisciplinary team approach.
Budget  $98,400.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Amyotrophic Lateral Sclerosis
Population Served Families
Program Short-Term Success  Increase the number of specialist on each of our multi-disciplinary teams.
Program Long-Term Success  As our MDA Care Centers is a national program, we plan to increase the number of patients we see by 50%. We are currently seeing 1,100 patients annually in our MDA Care Centers. The long term goal will be to increase that number to 1,650.
Program Success Monitored By  Staci Lane, Family Services and Clinical Care Coordinator
Examples of Program Success  Due to the large Southern California territory that our office covers, our Loma Linda MDA Care Center has expanded by offering remote care centers where we travel to for our families that are unable to come to us due to transportation conflicts. Due to this we’ve been able to increase the number of patients that we’re seeing.

Loan Closet

MDA’s equipment program helps provide good-condition, gently used wheelchairs and other medical equipment, such as shower chairs, hospital beds, walkers, canes, communication devices and similar items, when available and as feasible. We accept donations of medical equipment for distribution through our program. We are also able to make minor repairs to gently used items.
Budget  $8,255.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Muscular Dystrophy
Population Served Families
Program Short-Term Success 

a. We have a plan in place to market and promote our loan closet items so we’re able to start the increase of the number of items that we loan out. We plan to double our items loaned out during the 2016 calendar year.

Program Long-Term Success 

a. We are looking to increase the amount of items that we’re loaning out to our families. We currently loan out approximately 40 items annually and we’re looking to increase that to 200 items annually to be as successful as it can be.

Program Success Monitored By  Staci Lane, Family Services and Clinical Care Coordinator
Examples of Program Success  The success of our loan closet isn’t just measured on the number of items that we loan out, but by the relationships that are built and the joy that our families receive when they’re receiving this services from us that eliminates stress in their lives.

Support Groups

MDA offers support groups including many that are disease-specific and others that are topic-focused, such as groups for caregivers, parents, grief and loss, transitions, etc. In the support group setting, you and/or your loved ones can share everything from tears and laughter to medical and financial tips and travel stories and recipes. More importantly our families find a sense of fellowship and a personal connection that strengthens everyone involved.
Budget  $7,500.00
Category  Human Services, General/Other Family-Based Services
Population Served Families
Program Short-Term Success 

a. We have plans to double to number of participants in each support group this year.

Program Long-Term Success  We are developing a volunteer program within our organization in order for us to increase the number of support groups that we currently have available.
Program Success Monitored By  Staci Lane, Family Services and Clinical Care Coordinator
Examples of Program Success  We have 6 support groups and all of them have been strong groups for over 10 years. I attribute the success of these groups to the facilitators that we’ve hired and the knowledge and resources that they each bring to our groups.

Muscle Walk

Each day, everyday freedoms like walking, hugging, playing and even breathing are taken away from kids and adults in our community with muscular dystrophy, ALS and related muscle-debilitating diseases. Through MDA's annual Muscle Walk program, we bring families together to celebrate life. This program gives our clients and their families an extension of support. This is their opportunity to acquire more information on healthcare services, meet individuals going through similar situations and inspire hope in them knowing that MDA is working tirelessly to find treatments and cures for all types of muscular dystrophy and ALS.
Budget  $100,000.00
Category  Recreation & Sports, General/Other Parks, Recreation & Leisure Facilities
Population Served Families
Program Short-Term Success  Our short term success is to create a fun-filled morning/afternoon for our families that attend. We incorporate education, updates, resources as well as live music, vendor booths and other attractions.
Program Long-Term Success  Each year, we work to grow the number of event attendees, sponsorship and team/individual income.
Program Success Monitored By  We measure success by number of attendees, overall income raised and of course feedback we receive from our guests and sponsors after the event.
Examples of Program Success  Increased dollars raised to support our local healthcare efforts, number of sponsors, number of event attendees, overall feel of the event.

Management


CEO/Executive Director Mr. Steve C. Derks
CEO Term Start Sept 2012
CEO Email [email protected]
CEO Experience Steven M. Derks was named President and Chief Executive Officer of the Muscular Dystrophy Association after a nationwide search in 2012. Derks, a leading executive in health-care-related nonprofit organizations, was previously the CEO of the American Cancer Society, Illinois Division. "MDA’s commitment to fighting muscle diseases is unmatched, and I look forward to working collaboratively with our dedicated Board, donors, volunteers and team of employees to continue to elevate the important work of the Association," said Derks.

Former CEOs and Terms

Name Start End
-- -- --

Senior Staff

Name Title Experience/Biography
Valerie A Cwik, M.D. Senior Vice President of Research & Health Care Services --
Kevin W. Moran Program Development --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

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Staff Information

Number of Full Time Staff 1,001
Number of Part Time Staff 0
Number of Volunteers 1,001
Number of Contract Staff 0
Staff Retention Rate % --
Staff Professional Development --

Staff Demographics

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

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Under Development
Years Strategic Plan Considers --
Management Succession Plan Yes
Organization Policies And Procedures Yes
Business Continuity of Operations Plan Yes

Risk Management Provisions

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

Reporting and Evaluations

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

Government Licenses

--

CEO Comments

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Foundation Comments

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Governance


Board Chair Ms. Denise Hines
Board Chair Company Affiliation Crown Prince Seafod
Board Chair Term 2002 - 2017
Board Co-Chair Ms. Jan Barton
Board Co-Chair Company Affiliation Trimen Oil
Board Co-Chair Term 2001 - 2017

Board Members

Name Company Affiliations Status
Humberto Agurcia Los Angeles Fire Department --
Celena Barton Community Volunteer Voting
Jan Barton Trimen Oil Voting
Joe Belsito Dynamic Online --
Linda Belsito Dynamic Online --
Ms. Denise Hines Crown Prince Seafood Voting
Joe McKnight Access Medical – VP Clinical Development --
Kamran Meshkani Aero Mobility --
Jesse Muzquiz Fedex --
Lauren Pycz Karns Azusa Pacific --
Dennis Sabatino Sun City Casino Voting
Ed Sandoval Sandoval Heating/AC Voting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Additional Board Members and Affiliations

Name Company Affiliations Status
-- -- --

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 9
Hispanic/Latino: 2
Native American/American Indian: 0
Other: --
Other (if specified): --
Gender Female: 5
Male: 7
Not Specified 0

Board Information

Board Term Lengths 4
Board Term Limits 4
Board Meeting Attendance % 90%
Written Board Selection Criteria --
Written Conflict Of Interest Policy --
Percentage of Monetary Contributions 90%
Percentage of In-Kind Contributions 95%
Board Orientation --

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 2013 (%)

Expense Breakdown 2012 (%)

Expense Breakdown 2011 (%)

Fiscal Year Jan 01, 2016 to Dec 31, 2016
Projected Revenue $1,373,458.00
Projected Expenses $87,753.00
Form 990s

2014 MDA Financial Statement

2013 MDA Form 990

2012 MDA Form 990

2011 MDA Form 990

Audit Documents --
IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2013 2012 2011
Total Revenue $150,325,720 $152,115,051 $156,588,617
Total Expenses $148,005,192 $166,824,047 $175,594,205

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2013 2012 2011
Foundation and
Corporation Contributions
$25,645,964 $25,239,089 $29,218,113
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified $0 $0 $0
Individual Contributions -- -- --
Indirect Public Support $685,404 $723,715 $778,888
Earned Revenue $0 $0 $0
Investment Income, Net of Losses $1,429,780 $1,260,472 $1,887,619
Membership Dues $0 $0 $0
Special Events $118,658,726 $123,594,432 $127,089,289
Revenue In-Kind $532,367 $720,811 $0
Other $1,171,110 $1,209,221 $1,274,531

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2013 2012 2011
Program Expense $112,444,980 $128,614,787 $135,599,107
Administration Expense $14,025,336 $14,632,131 $15,362,456
Fundraising Expense $21,534,876 $23,577,129 $24,632,642
Payments to Affiliates $0 $0 $0
Total Revenue/Total Expenses 1.02 0.91 0.89
Program Expense/Total Expenses 76% 77% 77%
Fundraising Expense/Contributed Revenue 15% 16% 16%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2013 2012 2011
Total Assets $102,852,460 $100,099,622 $98,307,873
Current Assets $36,145,451 $12,996,583 $17,667,755
Long-Term Liabilities $49,681,789 $65,604,926 $50,003,889
Current Liabilities $32,039,474 $33,030,168 $34,946,788
Total Net Assets $21,131,197 $1,464,528 $13,357,196

Short Term Solvency

Fiscal Year 2013 2012 2011
Current Ratio: Current Assets/Current Liabilities 1.13 0.39 0.51

Long Term Solvency

Fiscal Year 2013 2012 2011
Long-term Liabilities/Total Assets 48% 66% 51%
Endowment Value --
Spending Policy Percentage
Percentage(If selected) 25%
Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

CEO Comments

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Foundation Comments

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Documents