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California Coalition for PKU and Allied Disorders

 2310 Homestead Rd Suite C1, PO Box 154
 Los Altos, CA 94024
[P] (650) 4171738
[F] --
www.ccpkuad.org
[email protected]
Diane Pytel
FOUNDED: --
INCORPORATED: 1983
 Printable 1 Page Summary
 Printable Profile
Organization DBA California Coalition for PKU and Allied Disorders
Former Names PKU Parents of California (2006)
Organization received a competitive grant from the community foundation in the past five years No
Employer Identification Number 94-2812295 00000

Summary


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Mission StatementMORE »

Our mission is to provide support, education and advocacy to all families in California who are involved with or affected with Phenylketonuria (PKU) and/or Allied disorders. 

Mission Statement

Our mission is to provide support, education and advocacy to all families in California who are involved with or affected with Phenylketonuria (PKU) and/or Allied disorders. 

FinancialsMORE »

Fiscal Year 2017
Projected Expenses $15,000.00
Projected Revenue $10,000.00

ProgramsMORE »

  • CPKUAD Family Network

Revenue vs. Expense ($000s)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

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


Overview


Mission Statement

Our mission is to provide support, education and advocacy to all families in California who are involved with or affected with Phenylketonuria (PKU) and/or Allied disorders. 

Background Statement

CCPKUAD (formerly PKU Parents of California) was formed in 1983 to provide support to individuals and families with Phenylketonuria (PKU).  PKU is a rare inherited inborn error of metabolism in which those affected cannot metabolize phenylalanine (Phe) and amino acid found in protein.  The Phe builds up in the blood, crosses the blood-brain barrier and causes brain damage.  It is detected through the California Newborn Screening Program which has been in effect since 1966.  If detected and treatment is started shortly after birth the outcome is normal.  Those born before newborn screening or those late diagnosed are severely affected with mental retardation and many reside in group homes or state institutions.  The treatment is dietary which includes a medical food product to provide all the necessary vitamins, minerals and nutrients needed for normal growth without Phe.  Low protein products are also needed as there is Phe in all protein.  Therefore, those affected must restrict high protein foods such as meat, milk, cheese, fish, nuts, beans, chicken, fish and most grains.  They must follow a Phe-restricted vegetarian meal plan with low protein products and a medical food product with all the other nutrients needed for growth except Phe.  The diet is extremely difficult to follow and the low protein products are very difficult to work with.  We facilitate low protein cooking classes, education on the latest products and research and also help advocate for coverage.  Some families in California do not get these products covered by insurance, so we actively advocate for coverage and raise money for those in need.  

Impact Statement

Many have never heard of PKU.  This is because it is an inherited rare inborn error of metabolism.  It is estimated that there are only about 2,000 individuals residing in California with this diagnosis.  The treatment is very difficult and expensive, but it is lifesaving.  We provide support by conducting cooking classes using the low protein products, education and fundraising for to find a cure.  We strive to provide these individuals a normal life, for without treatment, they will be severely mentally impaired.
We provide financial gifts to the National PKU Alliance to continue to advance research for cutting edge PKU treatments and one day a cure.  We also raise money for advocacy to support the Medical Foods Act which will mandate coverage in all states for the treatment.  Our top three goals are to start a family camp, further develop events especially for teens, when the diet is extremely challenging.  We also want to raise money to support local research.

Needs Statement

Currently, we are an all volunteer group consisting of parents of children and adults with PKU or individuals with PKU.  We need volunteers who are willing to commit and follow through with tasks to advance CCPKUAD with our goals, such as the need to raise funds, start a successful family camp and help with advocacy,  We need funds to provide medical food products or low protein food for those in need.  We need programs to help parents of children with PKU adhere to dietary recommendations as well as programs for teens and adults.  

CEO Statement

We are grateful for your contribution to our organization!  Thank you for supporting CCPKUAD!

Board Chair Statement

It is imperative that our organization continue to provide support to this population, raise funds for research and funds for medical food product or low protein products if needed.  Availability of products is crucial for optimal outcome.  We must also build our community to ensure all individuals receive treatment and the needed support to adhere to treatment recommendations. 

Other Ways to Donate/Volunteer

Mail check, pay through PayPal on the website.  We are looking for volunteers for fundraising, advocacy, and family camp volunteers.

Geographic Area Served

Central Orange County
West Orange County
South Orange County
North Orange County
We serve all of Orange County and the entire state of California.

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Birth Defects & Genetic Diseases
  2. Diseases Disorders & Medical Disciplines - Birth Defects & Genetic Diseases
  3. Diseases Disorders & Medical Disciplines - Birth Defects & Genetic Diseases

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Programs


CPKUAD Family Network

Our program connects new families with older families to provide assurance and guidance.  We do this though our annual "family day" and our monthly newsletter.  We are finalizing a brochure for the state newborn screening program to advertise our group to all newly diagnosed PKU individuals and allied disorders.  We also  raise money for emergency medical food products or low protein foods.  We provide cooking classes to introduce new foods for adherence to the recommendations.  The treatment for these disorders is dietary and if the diet is not adhered to brain damage occurs.  The damage is preventable but families need assistance.  
Budget  $15,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served Families Families Families
Program Short-Term Success  Our short-term success would be to secure a fair number of volunteers to plan our family camp.  
Program Long-Term Success  The long term success of this program is every person in California with PKU or an allied disorder have the medical products and low protein food needed to comply with the recommendations and have the tools, support and guidance to achieve optimal quality of life.   
Program Success Monitored By  Our  success will be monitored by an increase in our membership and our growing committees.    
Examples of Program Success  Our program has been in effect since 1983.  Since there is no cure we will continue to have a population that needs to be served.  Albeit, we are very small as it is estimated there are only approximately 2,000 PKU individuals in California and the Allied disorders are even smaller.  We believe we provide a venue to help these families cope with theses diagnoses.  We are growing in numbers and look to educate and advocate for these families.  WE have a great opportunity to prevent intellectual disability.

Management


CEO/Executive Director Diane Pytel
CEO Term Start Jan 2014
CEO Email [email protected]
CEO Experience
 We have no CEO/Executive Director.  
Diane Pytel is president and has an 11 year old daughter with classic PKU.  She volunteers her free time to this organization. 

Former CEOs and Terms

Name Start End
-- -- --

Senior Staff

Name Title Experience/Biography
-- -- --

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 0
Number of Part Time Staff 0
Number of Volunteers 6
Number of Contract Staff 0
Staff Retention Rate % 0%
Staff Professional Development No

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 6
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 5
Male: 1
Not Specified 0

Plans & Policies

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

Risk Management Provisions

Nondiscrimination Policy --
Whistle Blower Policy --
Document Destruction Policy --
Directors and Officers Insurance Policy --

Reporting and Evaluations

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

Government Licenses

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CEO Comments

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Foundation Comments

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Governance


Board Chair Diane Pytel
Board Chair Company Affiliation President
Board Chair Term Jan 2013 -
Board Co-Chair Sybil Wilder
Board Co-Chair Company Affiliation Vice President
Board Co-Chair Term Mar 2012 -

Board Members

Name Company Affiliations Status
Kathryn Moseley President Voting
Diane Pytel member at large Voting
Margaret Robinson-Knight Secretary Voting
Maria Rosetti Treasurer Voting
Matthew Wilder Member-at-large Voting
Sybil Wilder Vice President 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: 6
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 5
Male: 1
Not Specified 0

Board Information

Board Term Lengths 2
Board Term Limits 0
Board Meeting Attendance % 80%
Written Board Selection Criteria Under Development
Written Conflict Of Interest Policy No
Percentage of Monetary Contributions 25%
Percentage of In-Kind Contributions 100%
Board Orientation No

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 2016 (%)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

Fiscal Year Jan 01, 2017 to Dec 31, 2017
Projected Revenue $10,000.00
Projected Expenses $15,000.00
Form 990s

2013 990N

2012 990N

2011 990N

Audit Documents --
IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2016 2015 2014
Total Revenue $13,467 $10,226 $11,333
Total Expenses $10,836 $6,497 $9,240

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2016 2015 2014
Foundation and
Corporation Contributions
$12,434 $4,958 $5,900
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- --
Individual Contributions $1,033 $5,268 $5,433
Indirect Public Support -- -- --
Earned Revenue -- -- --
Investment Income, Net of Losses -- -- --
Membership Dues -- -- --
Special Events -- -- --
Revenue In-Kind -- -- --
Other -- -- --

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2016 2015 2014
Program Expense $9,731 $4,868 $6,992
Administration Expense $1,106 $1,595 $1,517
Fundraising Expense -- $34 $730
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 1.24 1.57 1.23
Program Expense/Total Expenses 90% 75% 76%
Fundraising Expense/Contributed Revenue 0% 0% 6%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2016 2015 2014
Total Assets -- -- --
Current Assets -- -- --
Long-Term Liabilities -- -- --
Current Liabilities -- -- --
Total Net Assets -- -- --

Short Term Solvency

Fiscal Year 2016 2015 2014
Current Ratio: Current Assets/Current Liabilities nan nan nan

Long Term Solvency

Fiscal Year 2016 2015 2014
Long-term Liabilities/Total Assets nan% nan% nan%
Endowment Value $0.00
Spending Policy Income Only
Percentage(If selected) 90%
Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal $0.00
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

CEO Comments

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Foundation Comments

Due to its size, this organization files a 990N. They do not record asset information. Summary financial data is per the financials provided by the organization and consultation with the organization.

Documents


Other Documents

No Other Documents currently available.