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Home My WebLink AboutSpecial Event - Walk for Vascular Ehlers-Danlos Awareness - May 25 (Rain Date June 1)Q� ti 1 APPLICATION FOR USE OF PUBLIC RIGHT-OF-WAY FOR EVENT e _7 The following special event has been approved by the Special Events Committee. " lees . Submitted by: Denise Miller Event name: Walk for Vascular Ehlers-Danlos Awareness Event Date: May 25 2024 (Rain Date June 1 2024 ) Street Closure: Rolling closure Northside & Sample Closure Times: 2:00 pm to 4:00 pm Sidewalk Closure: ❑ Yes ❑■ No Comments: Walk to support research for a rare and hereditary disease. CITY OF SOUTH BEND, INDIANA BOARD OF PUBLIC WORKS Elizabeth A. Maradik, President Gary A. Gilot, Member Murray L. Miller, Member WX Joseph R. Molnar, Vice President Briana Micou, Member �4 Attest: Theresa M. Heffner, Clerk Date: March 12, 2024 1 • City of South Bend Special Event Application t Neighborhood Event $25 application fee if filed 30 days or greater (up to 180 days) in advance of event. Please Brine Completed Application and Payment to: Public Works Service Center, 731 S. Lafayette Blvd., South Bend, IN Review the Instructions on the Special Events page before completing the application. Neighborhood Special Event applications must be submitted more than 30 days in advance of the event date or the application will not be accepted. Section A - Applicant Information Date of Application: Z-DZq OntanizationName: Appl icant (Contact) Applicant (Contact) Secondary Contact Name: Contact �P�hyyo��ney Y' 6 1 3 Contact Emi Address[ nY r City/State/ZIP: Event Nam Requested From (Cross Stret To (Cross Street): Provides IyW descfption�of.t,hS event: Date of Event Setup [mm/dd/yy]: 6,r? - Zw-14 Time: Z. t�P: Begin Date of Event [mm/dd/yy]:6 - Z6' ZDZ-L Time: Z : tP P. vvt- r End Date of Event [mm/dd/yy]: A - 26' 202-L4 Time: `` f1:1, P, W�- Event Cleanup Completion [mm/dd/yy]!; - ZJ , Z02—LI Time: y � C' p, ty.,, Have all residents on the affected block have been notified and invited? ❑ Yes ❑ No Please attach a copy of the door hanger or letter used to notify residents in addition to signature attachment. Number of households fronting the proposed street closure: Number of households represented by signatures on attached sheet: Will this event have music (live or other)? ❑ Yes Z. No • Section C - Alcohol Will alcohol be served or sold? ❑ Yes No If Yes: o The applicant must apply for and receive a temporary liquor license from the Alcohol & Tobacco Commission. o Application cannot be processed without a copy of this license. o A refundable $400.00 deposit paid by card or check (made to City of South Bend) must be submitted with application. o Application cannot be processed without deposit. o Deposit will be returned upon inspection of event area by the Board of Public Works. The applicant must submit a map or drawing of: o Fencing around serving area o Trash receptacles Events that will have alcohol sales must provide security. If your event will be hiring a security company, please provide its contact information in sub -section (a) below. Otherwise, please list the names, phone numbers, and qualifications (e.g. Off -duty police officer, professional security guard, or event applicant) of three (3) security guards in the fields provided in sub -section (b). (a) Security Company In;ormation Company Name: i A Contact Name: Contact Phone: Email: Address: City/State/ZIP: (b) Independen Securi ty Information Name: A Contact Phone: Contact Phone: Qualifications: Name: Contact Phone: Qualifications: 11 • Section D - Food Will your event have food sales (food vendors, caterers, food trucks, etc.)? ❑ Yes ;9 No If yes, the event coordinator must apply for and receive a St Joseph County Health Department Temporary Event Permit. Vendor(s) must also apply for and receive a St. Joseph County Health permit. Health Permits must be filed with the county 30 days prior to the proposed event Each vendor must obtain necessary permits to serve on -site and display these permits at the event. All applications and guidelines can be found on the St. Joseph County Health Department Food Service website at sichd.orelfood-service. Please select food types: ❑ Food Vendor ❑ Caterer ❑ Food Truck ❑ Other: If a Food Truck, please list company name(s): Please describe how food will be cooked and served: • C � J r-I L • Date: Event Section E - Indemnity & Hold Harmless Agreement City of South Bend Special Events Committee Indemnity & Hold Harmless Agreement Event Date: - L' -ZQ2-`7 Organization: Applicant(Contact)Name: ►/'�7USYt!iJrr��(' Applicant (Contpct) Phone:67 41' l� 770J r q 29 Alt. PhoneA'`�' Email: Event Location (Please describe): ,rD _ rpoo Length of Event (Dates/Times): Rare Da�G G-/ 2y APPLICANT agrees to indemnify, defend and hold harmless the Civil City of South Bend, Indiana, from any liability, loss, costs, damages or expenses, including attorney fees, which the Civil City of South Bend, may suffer or incur as a result of any claims or actions which may be made against the City, its agents, employees, or subdivisions by any person, including a participant in the activity, arising out of the approval of this request by the Civil City of South Bend, Indiana, through the Board of Public Works, to close a portion of the public right-of- way for the event described above, or for any harm or damage alleged to have occurred because of the holding of the special event. The undersigned certifies that he/she is authorized to bind the APPLICANT to these terms. Signed on this Dat �^�& Authorized Organizer Signature Printed Name and Title • I have read the Application and the Permit and Agreement for this Special Event and 1 affirm the truth of the information provided by me to the best of my knowledge. I understand and agree to the above rules and regulations, and any applicable state and federal laws. I also understand that this application may be denied based on any false or incomplete information. Date: Z -2-Z-2jo-24,4 Applicant Printed Name: W SPECIAL EVENTS COMMITTEEp��/�APPROVAL `Q��A l W ident Me' r Kv/e Lud/au/ (learns) Member Member Member ,;?-18-AI/ Date • • MAYO CLINIC 1-3 117-11 Join Austin in Supporting Ehlers Danlos Syndrome Research at Mayo Clinic This is my grandson, Carlos, he is five years old and has Vascular Ehlers- Danlos. Carlos was diagnosed with Ehlers-Danlos two weeks before his father, my Son Justin, died on March 30. 2015. Justin died at the age of 21 from this rare and hereditary disease He was proceeded In death by �my late pregnant fa who tlied at the sae o132 on Mav 31 3 Pamela also Zed d� ue to - complications from Vascular Ehiers-Danlos. Pamela also lost her father, her grandfather, all of her uncles, and three cousins to this mysterious disease. Ehlers-Danlos remains largely unknown to the public, its invisibility adversely effects the funding and research put into solving this deadly killer. Carlos is destined to lost the few cousins he has to this rare yet deadly disease. I implore you to put a face to this rare disease and in doing so you would draw the attention Ehlers-Danlos so desperately needs. Due to Ehlers-Danlos Carlos will never have the pleasure of knowing, playing, talking or spending tiem with his father or grandmother_ Due to Vascular Ehlers- Danlos Carlos will not be able to play sports, can't lift anything heavy, and has to be careful wilh any physicial activity he does. Carlos is a happy, vibrant. smart 5 year old and I desire that he may obtain a full and enjoyable life. So I am wirting this letter to raise awareness about this rare disease, with greater intellectual and financial investment poured into Ehlers-Danlos research a cure can be found. Ehlers-Danlos effects somewhere between 1 in 2500 to 1 in 5000 people in the United States. Medical understanding about this disorder seems to be limited among society and even medical professions. There are six different type forms of Ehlars-Danlos. The most fatal is the vascular where patients suffer from life threatening arterial dissections and ruptures. The lifepan for an individual with Vascular Ehlers-Danlos is uncertain but many die by age 30. This is why I am trying to spread awareness about this disorder. I believe my late wife Pamela and my late son Justin would be proud of my efforts. I knwo my grandson is proud of my efforts I am making to draw awareness to his medical plight. I am fighting for my grandson's life and my late wife's bloodline. I started a walk to develop greater awareness about Ehlers-Danlos. Please help save my grandson. WIJ 3,0-5 Have You Heard Of vEDS Ehlers — Danlos is a rare disease that effects somewhere between 1 in 2,250 to 1 in 5,000 people in the United States. The understanding of the disorder tends to be limited among society and medical professionals. There are six various types of Ehlers — Danlos, Classical type, Hypermobility type, Kyphoscoliosis type, Arthrochalasia type, Dermatosparaxis type, Vascular type is the most serious, where patients lives is dramatically shorten largely as a result of spontaneous rupture of the large arteries, uterus, or bowel. Among arterial dissections and ruptures, spontaneous coronary artery dissection. Vascular Ehlers — Danlos Syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. is ;7 A 0 p IT � k 'h en amf NA AM ml A ti 16 A low 0, ir 1 ;L-WI & k0:W440�' V Denise Miller rom: Austin Burks <austinburks44@yahoo.com> Sent: Wednesday, February 28, 2024 7:41 AM To: Denise Miller Subject: WALK FOR VASCULAR EHLERS-DANLOS AWARENESS Good Morning Denise, This is Austin Burks I forgot to put the rain date on the application that will be the following Saturday, June 1, 2024. Thank You, Austin Burks Sent from Yahoo Mail for Whone • CI