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.
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
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| Lobbyist Name | Exclusive Duties | Authorized On | Withdrawn On |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| Katie White | Exclusive Duties No | Authorized On 1/22/2019 | Withdrawn On N/A |
| Ramie Zelenkova | Exclusive Duties No | Authorized On 1/22/2019 | Withdrawn On N/A |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
Relating to: coverage of individuals with preexisting conditions.
Bill Text and History
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.
Relating to: coverage of individuals with preexisting conditions.
Bill Text and History
None
Notification Date1/23/2019
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
Biennial budget bill treatment of matter relating to
Health Services: Departmentwide
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.
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.
Biennial budget bill treatment of matter relating to
Health Services: Medicaid Services
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.
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
Development, drafting or introduction of a proposal relating to
COVID-19 related issues.
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.
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.
Development, drafting or introduction of a proposal relating to
DHS waivers of federal law, pilot programs, demonstration projects and rate adjustments.
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.
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.
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.
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% |
Topics relating to requirements and implementation of federal waivers, pilot programs, and demonstration projects within the Department of Health Services.
| 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.)
Other Matters
Includes time spent on:
- Gubernatorial nominations
- Matters on which the organization made no lobbying communication