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The presenters look forward to meeting you at CRF Ohio! Please Click Here to download the Agenda (Agenda subject to change).
Please review the slate of nominees for the Board of Directors and the additions and edits to our ByLaws, then click on the link to download and fill out your Proxy form. Your vote counts! Thank you for your support of the CRF!
Nominees for Election to the Board of Directors
PROPOSED: To elect the following persons as directors to serve for the specified years and/or until their successors have been elected and have qualified:
THREE (3) YEAR TERMS:
Neal Bench – North Carolina
Jeff Benelli – Kansas
Beth Foss – Pennsylvania
Kate Hillier-Edwards – Canada
John Trott – New Jersey
Tara Cassidy-Driscoll – Massachusetts
Tim Galvin – Australia
TWO (2) YEAR TERM:
Dr, Stephanie Vetere Sims – Florida
EDITS/ADDITIONS TO THE CRF BYLAWS
Note: Additions are underlined, deletions in
Article II, Section 1: Eligibility
Membership is by household and includes adults over age 18
living within that household. Duration of Membership is from the date of acceptance until the end of that fiscal year.
A. All household members over the age 18 are eligible to cast a vote.
B. Duration of Membership is from the date of acceptance until the end of that fiscal year, or as determined by the Executive Committee.
Article II, Section 3: Termination of Membership
• If the Annual Dues are not paid by August 15th of each year
Article II, Section 5: Lack of Quorum
If a quorum is not present, the presiding officer may adjourn the meeting to a day and hour fixed by him/her.
Article IV, Section 2: Election of Officers
After the General Election at the Annual Meeting, The Board of Directors shall elect from their midst a President, First Vice-President, Second Vice-President, Secretary and Treasurer to serve a term of one year or until their successor(s) have been elected.
At the Annual Meeting of Members and following the election of Directors, the Board of Directors shall elect from their midst a President, First Vice-President, Second Vice-President, Secretary and Treasurer to serve a term of one year or until their successor(s) have been elected.
Article IV, Section 6: Compensation (New) Directors may receive reimbursement for reasonable documented expenses incurred on behalf of the Corporation or in attending meetings of the Board of Directors. The Executive Committee shall hire and fix the compensation of any and all employees and/or independent contractors which they in their discretion may determine to be necessary for the conduct of the business of the organization. All expenses need to be pre-approved by the President and/or Executive Director.
Artcile IV, Section 7: Indemnification (New) Any Director or Officer who is involved in litigation by reason of his or her position as a Director of Officer of the Company shall be indemnified and held harmless by the organization to the fullest extent authorized by law as it now exists or may subsequently be amended (but, in the case of any amendment, only to the extent that such amendment permits the organization to provide broader indemnification rights).
Article IV, Section 8: Gifts (New) The Board of Directors may accept on behalf of the Corporation any contribution, gift, bequest or devise for the general purposes, or for any special purpose, of the Corporation. Prior to acceptance of any non-cash contribution, gift, bequest, or devise, from a person (other than marketable securities that are traded on a recognized securities exchange), the Board of Directors (or its designee) shall determine, by resolution thereof, that the acceptance of such non-cash contribution, gift, bequest, or devise by the Corporation would be in the best interests of the Corporation.
Article IV, Section 9: Loans to Officers and Directors Prohibited (New) No loans shall be made by the Corporation to its officers or directors, and any director voting for or assenting to the making of any such loan, and any officer participating in the making thereof, shall be jointly and severally liable to the Corporation for the amount of such loan until repayment thereof.
Article IV, Section 10: Dividends Prohibited (New) No part of the net income of the Corporation shall inure to the benefit of any private individual and no dividend shall be paid and no part of the income of the Corporation shall be distributed to its’ directors or officers. The Corporation may pay compensation in a reasonable amount to its officers or directors for services rendered and may reimburse them for reasonable expenses incurred on behalf of the Corporation.
Article VI, Section 3: Secretary
The Secretary shall record the minutes of all meetings and shall maintain permanent books and records of the Corporation to include the following: The Secretary or designee shall record the minutes of all meetings. Minutes shall be reviewed and shared with the Executive Committee and provided to the Operations Director or designee and shall maintain permanent books and records of the Corporation to include the following:
• Minutes of Board Meetings
• Minutes of Executive
Board Committee Meetings
• Minutes of General Annual Meetings
• Copies of Committee Reports including
o Treasurer’s reports
o Annual Audits
o Written reports of researchers
o A membership list created at the time of the Annual Meeting
• In addition, the Secretary will incorporate Director attendance into the minutes of the meeting.
Article VI, Section 4: Treasurer
• Update Donor Database information (Operations Manager duty)
Article VII, Section 1: Formation of Committees
These committees shall be,
but not restricted to determined based upon the current strategic plan as well as work needed to be done as identified as key initiatives, including:
EXECUTIVE COMMITTEE (No Changes)
NOMINATING COMMITTEE (No Changes)
FUNDRAISING COMMITTEE shall propose and implement plans to raise funds for the purposes of the Corporation. The Committee may seek grants from appropriate agencies, foundations and benevolent trusts, as well as from any other sources. Additionally, the Fundraising Committee will serve as a mentor resource for members wishing to host fundraising events.
AUDIT COMMITTEE (No Changes)
PUBLICATIONS AND COMMUNICATION COMMITTEE will focus on Website, Media and Publication. This committee will focus primarily on keeping the CRF website up to date, maintain a monthly newsletter and assist other committees as needed with media news releases, written documents, publications and other ad hoc communication to the membership.
INTERNATIONAL COORDINATING COMMITTEE (No Changes)
SCIENCE ADVISORY COMMITTEE (No Changes)
AD-HOC COMMITTEES (No Changes)
Article IX, Section 4: Executive Director Vacancy
A vacancy in the position of Executive Director shall be filled by appointment of the Executive Committee. Duties and the job description of the Executive Director shall be determined by the Executive Committee.
Article XII, Conflict of Interest (New Section)
Section.1. Purpose of Policy. The purpose of the conflicts of interest policy is to protect the Corporation’s interest when it is contemplating entering into a transaction or arrangement that might benefit the private interest of an officer or director of the Corporation. This policy is intended to supplement but not replace any applicable state laws governing conflicts of interest applicable to nonprofit and charitable corporations.
Section.2. Definitions. The following definitions shall apply in this Article ___.
Interested Person. Any director, principal officer, or member of a committee with board delegated powers who has a direct or indirect financial interest, as defined below, is an interested person. Financial Interest. A person has a financial interest if the person has, directly or indirectly, through business, investment or family: (i) an ownership or investment interest in any entity with which the Corporation has a transaction or arrangement, or (ii) a compensation arrangement with the Corporation or with any entity or individual with which the Corporation has a transaction or arrangement, or (iii) a potential ownership or investment interest in, or compensation arrangement with, any entity or individual with which the Corporation is negotiating a transaction or arrangement. Compensation includes direct and indirect remuneration as well as gifts or favors that are substantial in nature. A financial interest is not necessarily a conflict of interest. Under Section 11.3 (b) of this Article, a person who has a financial interest may have a conflict of interest only if the appropriate board or committee decides that a conflict of interest exists.
Duty to Disclose. In connection with any actual or possible conflicts of interest, an interested person must disclose the existence of his or her financial interest and must be given the opportunity to disclose all material facts to the directors and members of committees with board delegated powers considering the proposed transaction or arrangement.
Determining Whether a Conflict of Interest Exists. After disclosure of the financial interest and all material facts, and after any discussion with the interested person, he/she shall leave the board or committee meeting while the determination of a conflict of interest is discussed and voted upon. The remaining board or committee members shall decide if a conflict of interest exists.
Procedures for Addressing the Conflict of Interest.
An interested person may make a presentation at the board or committee meeting, but after such presentation he/she shall leave the meeting during the discussion of, and the vote on, transaction or arrangement that results in the conflict of interest.
The chairperson of the board or committee shall, if appropriate, appoint a disinterested person or committee to investigate alternatives to the proposed transaction or arrangement.
After exercising due diligence, the board or committee shall determine whether the Corporation can obtain a more advantageous transaction or arrangement with reasonable efforts from a person or entity that would not give rise to a conflict of interest.
If a more advantageous transaction or arrangement is not reasonably attainable under circumstances that would not give rise to a conflict of interest, the board or committee shall determine by a majority vote of the disinterested directors whether the transaction or arrangement is in the Corporation’s best interest and for its own benefit and whether the transaction is fair and reasonable to the Corporation and shall make its decision as to whether to enter into the transaction or arrangement in conformity with such determination.
Violations of the Conflicts of Interest Policy.
If the board or committee has reasonable cause to believe that a member has failed to disclose actual or possible conflicts of interest, it shall inform the member of the basis for such belief and afford the member an opportunity to explain the alleged failure to disclose.
If, after hearing the response of the member and making such further investigation as may be warranted in the circumstances, the board or committee determines that the member has in fact failed to disclose an actual or possible conflict of interest, it shall take appropriate disciplinary and corrective action.
Section.4. Records of the Proceedings. The minutes of the board and all committees with board-delegated powers shall contain:
the names of the persons who disclosed or otherwise were found to have a financial interest in connection with an actual or possible conflict of interest, the nature of the financial interest, any action taken to determine whether a conflict of interest was present, and the board’s or committee’s decision as to whether a conflict of interest in fact existed.
the names of the persons who were present for discussion and votes relating to the transaction or arrangement, the content of the discussion, including any alternatives to the proposed transaction or arrangement, and a record of any votes taken in connection therewith.
A voting member of the board of directors who receives compensation, directly or indirectly, from the Corporation for services is precluded from voting on matters pertaining to that member’s compensation. A voting member of the board of directors who receives compensation, directly or indirectly, from the Corporation for services is precluded from discussing and voting on matters pertaining to that member’s compensation, although the member is not prohibited from providing information to the board of directors regarding the compensation.
A voting member of any committee whose jurisdiction includes compensation matters and who receives compensation, directly or indirectly, from the Corporation for services is precluded from voting on matters pertaining to that member’s compensation.
Section.6. Annual Statements. Each director, principal officer and member of a committee with board delegated powers shall annually sign a statement which affirms that such person (a) has received a copy of the conflicts of interest policy, (b) has read and understand the policy, (c) has agreed to comply with the policy, and (d) understands that the Corporation is a charitable organization and that in order to maintain its federal tax exemption it must engage primarily in activities which accomplish one or more of its tax-exempt purposes.
Click here to download the 2017 Voting Form
PRESENTED BY THE CHOROIDEREMIA RESEARCH FOUNDATION
OCTOBER 22, 2016
HAMPTON INN, TREMONTON UT
MEETING AGENDA AND SCHEDULE
Click here to download and print this agenda
8:00 – 9:00am – Meeting registration, social hour. Coffee, refreshments provided.
9:00 – 9:30 – Introduction – Bob Pettipaw.
Topics covered – Meeting agenda. Personal history. Genetic link of CHM. Brief history of current and pending natural history studies and clinical trials. Local and national resources for CHMers. Benefits of joining the CRF.
9:30-9:45 – Break and set up for speakers.
9:45 – 11:15 – CRF Operations manager Cory MacDonald.
Topics covered – CRF History/Overview, Ways to find Support/Information, Fundraising.
11:15 – 11:45 – Questions and open forum.
11:45 – 1:00pm – Break for lunch and social.
1:00 – 2:30pm – Mr. Randy Wheelock. Chief Advisor for Research and Therapy Development
Topics covered – The science of CHM, History and genetic link. Current and future natural history studies and clinical trials. Early results. How to be involved in the process.
2:30 – 2:45 – Break
2:45 – 3:00pm – Bob and Paige Pettipaw.
Topics covered – Geneology and family history resources. Family dynamics and the elephant in the room.
3:00 – open ended – Questions and answers to all participants.
Open ended – Post meeting social time.
Please click to download and view the pdf file for the UPenn MRI Study. We appreciate your involvement in this study!
Use the following link to go to GoodShop.com and book your flight. When the page loads, scroll down and click on Choroideremia Research Foundation. It will then ask you to sign in. A percentage of your purchase will go directly to the CRF!
If you wish to rent a car, there are several car rental agencies at the airport. Again, use the GoodShops link above to book your car rental and help support the CRF. Hotel parking is complimentary!
The hotel has free shuttle service to and from the airport. After you arrive and collect your baggage, call the hotel at 215-365-4500, advise them of the airline and terminal you are in and they will come pick you up. For service to the airport, the shuttle leaves the hotel every half hour. Please be in the lobby at least 5 minutes before you leave.
Below you will find a listing of restaurants, historic sites and interesting places you may want to visit during your stay in Philadelphia. Our thanks to the Philadelphia locals who helped to compile this listing!
Ralph’s Italian Restaurant– 760 S 9th St, Philadelphia, PA 19147
• Oldest family owned restaurant in the country, located in the Italian market
Victor’s Café– 1303 Dickinson St, Philadelphia, PA 19147
• Filmed Rocky 6 here/Italian opera singers play while eating fun atmosphere
El Vez– 121 S 13th St, Philadelphia, PA 19107
• Best Mexican food in the city
Ting Wong– 138 N 10th St, Philadelphia, PA 19107
• Best Chinese Food in the city
Vic Sushi Bar– 2035 Sansom St, Philadelphia, PA 19103
• Highly rated sushi bar
Reading Terminal Market– 12th and Arch St
• Great Pub Food
Independence Beer Garden– 100 S Independence Mall W, Philadelphia, PA 19106
• Near Liberty Bell, American food & 40+ regional craft beers on tap.
Geno’s Steaks & Pat’s King of Steaks-1219 S 9th St, Philadelphia, PA
• Who was first? Who is better? Try them both & decide for yourself!
Prohibition Taproom– 501 N 13th St, Philadelphia, PA
Sampan– 124 S 13th St, Philadelphia, PA 19107
• Center City neighborhood, fine Asian cuisine
Frankford Hall– 1210 Frankford Ave, Philadelphia, PA 19125
• Beer garden specializing in German food & craft beer
Independence Visitor Center– 6th Ave & Market St, Philadelphia, PA
• Information on everything in the area
Independence National Historical Park– 1 N Independence Mall W, Philadelphia, PA 19106
• National Park, near Liberty Bell, Independence Hall, etc.
Independence Hall– 520 Chestnut St, Philadelphia, PA 19106
Liberty Bell– 6th St & Market St, Philadelphia, PA 19106
Betsy Ross House– 239 Arch St, Philadelphia, PA 19106
• American Flag house & Betsy Ross Memorial
Philadelphia Mint– 151 N Independence Mall E, Philadelphia, PA 19106
• Daily tours
Eastern State Penitentiary– 2027 Fairmount Ave, Philadelphia, PA 19130
• Daily tours
Philadelphia Zoo– 3400 W Girard Ave, Philadelphia, PA 19104
• One of the top in the country, great to take the kids
Citizens Bank Park– 6th St & Market St, Philadelphia, PA 19106
• Phillies Games
Lincoln Financial Field– 1 Lincoln Financial Field Way, Philadelphia, PA
• Eagles Games
Xfinity Live– 1100 Pattison Ave, Philadelphia, PA 19148
• Fun night life
• Daily tours
Love Park– 1599 John F Kennedy Blvd, Philadelphia, PA 1910
Boat House Row– 1 Boathouse Row, Philadelphia, PA 19130
Rocky Balboa Statue– 2600 Benjamin Franklin Pkwy
The Bourse– 111 S Independence Mall E, Philadelphia, PA
• Food Court & Specialty Shops
Franklin Square– 200 N 6th St, Philadelphia, PA
• Carousel, Mini-Golf, SquareBurger
Fright Factory– 38 Jackson St, Philadelphia, PA
• Haunted House Attraction
Philadelphia’s Magic Gardens– 1020 South St, Philadelphia, PA
• Mosaic Gallery & Community Arts Center
Spirits of ’76 Ghost Tours of Philadelphia– 325 Chestnut St, Philadelphia, PA 19106 (Outside of Mrs. K’s Koffee Shop)
• Haunted History & Folklore. Audio Tours available.
Yards Brewing Company– 901 N Delaware Ave, Philadelphia, PA
• Sat-Sun Tours, 12-4, Tasting Room open 7 days
Lucky Strike Philadelphia– 1336 Chestnut St, Philadelphia, PA
• Bowling, bar & food
Please Touch Museum– 4231 Avenue of the Republic, Philadelphia, PA
• Great for kids
The Barnes Foundation– 2025 Benjamin Franklin Pkwy, Philadelphia,PA
• Post-Impressionist Art
The Franklin Institute– 222 N 20th St, Philadelphia, PA
• Science Museum
The Mutter Museum– 19 S 22nd St, Philadelphia, PA
• Medical History, anatomical samples, instruments, etc.
National Constitution Center– 525 Arch St, Philadelphia, PA
• U.S. Constitution, rare artifacts, theater
Philadelphia Museum of Art– 2600 Benjamin Franklin Pkwy, Philadelphia, PA
• One of the largest art museums in the U.S., over 227,000 ojects
Rodin Museum– Franklin Pkwy @ 22nd St, Philadelphia, PA
• Beaux-Arts architecture museum & formal French Garden featuring Auguste Rodin Sculptures
The Embassy Suites Philadelphia/Airport hotel is excited and proud to host the 2016 CRF Conference! Located at 9000 Bartram Avenue, Philadelphia, PA 19153, the hotel is located close to the airport with easy shuttle access to public transportation and nearby restaurants. For a listing of local activities, attractions and recreation in the Philadelphia area, please visit our Things To Do page.
Room rates for the conference are only $179 per night (plus applicable taxes)! This rate includes complimentary Wi-Fi in all rooms/public areas, free buffet breakfast and access to all the great amenities the hotel offers. Important: The Embassy Suites is a Smoke-Free Hotel.
The code to get this discounted room rate is CRF. Please refer to this code when booking your room. There are three ways to book your hotel room:
1. Call the hotel directly, 215-365-4500,
2. Click here to reserve your room online, or
3. Call toll free, 1-800-EMBASSY (800-362-2779)
The deadline for booking your room is May 24th, 2016, so book today!
Information on the free hotel shuttle service is on the Travel Tips page.
The hotels listed below are the closest to the Castle of Knights in Chicopee, where Dining in the Dark will be held. I have included links to each hotel but all four are also listed on Hotels.com. If you search by using the address for the Castle of Knights (1599 Memorial Drive, Chicopee, MA) they are the first four listed. You may find a better deal there than on the hotel site.
Hampton Inn Chicopee/Springfield
600 Memorial Drive, Chicopee, MA
Distance from venue: 1.8 miles
Link to Hotel Website
Residence Inn Springfield/Chicopee
500 Memorial Drive, Chicopee, MA
Distance from venue: 2.0 miles
Link to Hotel Website
Quality Inn Chicopee/Springfield
463 Memorial Drive, Chicopee, MA
Distance from venue: 2.1 miles
Link to Hotel Website
Days Inn Springfield/Chicopee
450 Memorial Drive, Chicopee, MA
Distance to venue: 2.1 miles
Link to Hotel Website