Cystic Fibrosis Foundation

Registered Principal Details

Business Or Interest:
We are a donor-funded, 501(c)(3) nonprofit that is fully accredited by the Better Business Bureau's (BBB) Wise Giving Alliance program.

Lobbying Interests:
All matters relating to research, care, and support for people with cystic fibrosis and their families including issues such as Medicaid, Drug Formularies, Chronic Disease Program, Newborn Screening, Insurance, and Organ Donation.

Contact
SV
Sarah Verbofsky
4550 Montgomery Avenue, Suite 1100N
Bethesda, MD 20814
(240) 482-2872
sverbofsky@cff.org

Authorized Lobbyists

Lobbyist Name Exclusive Duties Authorized On Withdrawn On
Katie White Exclusive Duties No Authorized On 1/22/2019 Withdrawn On N/A
Ramie Zelenkova Exclusive Duties No Authorized On 1/22/2019 Withdrawn On N/A

Lobbying Interests

Legislative Bills/Resolutions

Assembly Bill 1
Assembly Bill 1
Relating to: coverage of individuals with preexisting conditions.

Bill Text and History

None
Notification Date
1/23/2019
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

Budget Bill Subjects

Health Services: Departmentwide
Biennial budget bill treatment of matter relating to
Health Services: Departmentwide

Notification Date
3/4/2019
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

Health Services: Medicaid Services
Biennial budget bill treatment of matter relating to
Health Services: Medicaid Services

Notification Date
3/4/2019
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

Topics Not Yet Assigned A Bill Or Rule Number

COVID-19 related issues.
Development, drafting or introduction of a proposal relating to
COVID-19 related issues.

Action Intended To Affect
Both Legislative matter and rule

Notification Date
3/25/2020
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

DHS waivers of federal law, pilot programs, demonstration projects and rate adjustments.
Development, drafting or introduction of a proposal relating to
DHS waivers of federal law, pilot programs, demonstration projects and rate adjustments.

Action Intended To Affect
Both Legislative matter and rule

Notification Date
1/27/2019
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

Topics relating to requirements and implementation of federal waivers, pilot programs, and demonstration projects within the Department of Health Services.
Development, drafting or introduction of a proposal relating to
Topics relating to requirements and implementation of federal waivers, pilot programs, and demonstration projects within the Department of Health Services.

Action Intended To Affect
Both Legislative matter and rule

Notification Date
1/23/2019
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.

Total Lobbying Effort

  2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
Total Lobbying Expenditures 2019
January - June
$15,625.00
2019
July - December
$16,394.60
2020
January - June
$15,000.00
2020
July - December
$15,000.00
Total $62,019.60
Total Hours Communicating 2019
January - June
6.00
2019
July - December
0.00
2020
January - June
0.00
2020
July - December
3.75
Total 9.75
Total Hours Other 2019
January - June
77.00
2019
July - December
28.50
2020
January - June
52.00
2020
July - December
31.50
Total 189.00

Percent Allocation of Lobbying Effort

Legislative Bills/Resolutions

Relating to: coverage of individuals with preexisting conditions.
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
30%
2019
July - December
2020
January - June
2020
July - December
Total 13%

Budget Bill Subjects

2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
10%
2019
July - December
2020
January - June
2020
July - December
25%
Total 9%
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
10%
2019
July - December
2020
January - June
2020
July - December
Total 4%

Administrative Rulemaking Proceedings

No administrative rulemaking proceedings found.

Topics Not Yet Assigned A Bill Or Rule Number

2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
30%
2019
July - December
50%
2020
January - June
2020
July - December
Total 20%
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
2019
July - December
2020
January - June
25%
2020
July - December
50%
Total 15%
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
2019
July - December
2020
January - June
25%
2020
July - December
Total 7%

Minor Efforts

(Time spent on matters each of which accounted for less than 10% of the organization's lobbying.)

Minor Efforts
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
10%
2019
July - December
10%
2020
January - June
10%
2020
July - December
10%
Total 10%

Other Matters

Includes time spent on:

  • Gubernatorial nominations
  • Matters on which the organization made no lobbying communication

Other Matters
2019
January - June
2019
July - December
2020
January - June
2020
July - December
Total
2019
January - June
10%
2019
July - December
40%
2020
January - June
40%
2020
July - December
15%
Total 23%

Filed Statements of Lobbying Activity and Expenditures